tag:blogger.com,1999:blog-27096548818354853532024-03-18T09:47:47.375+00:00The CF Trust BlogCF Trusthttp://www.blogger.com/profile/06716148805047403322noreply@blogger.comBlogger266125tag:blogger.com,1999:blog-2709654881835485353.post-77157007803555483492016-02-16T13:39:00.002+00:002016-02-16T13:39:34.693+00:00Wind, wind and more wind<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i><span style="line-height: 115%;">Last week in Oxford, the Cystic Fibrosis Trust brought together </span><span style="line-height: 18.4px;">gastrointestinal</span></i><span style="line-height: 115%;"><i> (GI) health experts from across Europe to look at the digestive complications that many people experience with cystic fibrosis. Along with the scientists and clinical staff, people with CF and their carers were represented. Below one of those parents, David Turner QC, gives us and insight on the research 'sandpit'.</i><br /><br />Storm Imogen was doing its best to bend trees double as 35
scientists and clinicians gathered in Oxfordshire for a research “sandpit”
devoted to the problems which cystic fibrosis causes for the digestive tract.
An introduction from Dr Jon King (a Senior House Officer at St Mary’s,
Paddington, who also has cystic fibrosis) outlined just how debilitating – and
embarrassing – these complications can be. For many, digestive complications
are amongst the most significant effects of cystic fibrosis.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The sandpit was the brainchild of Dr Janet Allen, the Trust’s
Director of Strategic Innovation. </span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Verdana, sans-serif;">Her idea was brilliantly simple: <o:p></o:p></span></span></div>
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<li><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;"><span style="font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;">Mix together cystic fibrosis clinicians,
gastro-intestinal clinicians, scientists specialising in CFTR defects and
leading lights in (non-CF) gastro-intestinal research.</span></li>
<li><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;"><span style="font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;">Add a dash of inspiration.</span></li>
<li><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;"><span style="font-stretch: normal; line-height: normal;"> </span></span><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;">Simmer under significant time pressure.</span></li>
<li><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;"><span style="font-stretch: normal; line-height: normal;"> R</span></span><span style="font-family: Verdana, sans-serif; line-height: 115%; text-indent: -18pt;">emove collective ideas for research priorities and
season under the bright light of instant peer review.</span></li>
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<span style="line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The assembled company involved experts from all parts of the
UK, Germany, Belgium, the Netherlands and Spain. Discussions were free-rolling,
leaping between subjects such as gut microbiota, DIOS, the impact of
antibiotics, prebiotics and probiotics, gut acidity, gut motility, bicarbonate
channels, chloride channels and methane testing. <o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The discussion was superbly marshalled and directed by
facilitators from Know Innovation. By mid-morning of the second day the
attendees were working together in small multi-disciplinary teams to define a
novel research question and to justify the question’s relevance by explaining
how it would make a real difference to the lives of people with cystic
fibrosis. Proposals for further refinement and, potentially, applications for
future research funding, included improving gastrointestinal health by
manipulating microbiota, identifying biomarkers that could help develop
personalised dietary plans, and designing a new supplement to improve fat
absorption.<o:p></o:p></span></span></div>
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<span style="line-height: 115%;"><span style="font-family: Verdana, sans-serif;">The aim of the sandpit was to stimulate discussion and to
provide the foundations for future, multi-disciplinary research collaborations
which might ultimately transform the lives of many. Not only was that aim
achieved, but a buzz was created which was palpable as everyone left to
confront the tail end of Imogen’s winds. All in all, this had been a
tremendously exciting and uplifting event!</span><span style="font-size: 14pt;"><o:p></o:p></span></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com141tag:blogger.com,1999:blog-2709654881835485353.post-42824052935813470702016-02-05T10:06:00.001+00:002016-02-05T10:06:19.362+00:00Stopping the Clock - You Voice Matters<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;"><i>With the ongoing success of our <a href="http://campaigns.cysticfibrosis.org.uk/ea-action/action?ea.client.id=1831&ea.campaign.id=46761&ea.tracking.id=web" target="_blank">Stopping the Clock petition on availability of precision medicines for cystic fibrosis</a>, our Chief Executive Ed Owen gives more insight into why this is such an important issue for the CF community.</i></span></div>
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<span style="font-family: Verdana, sans-serif;">When
10,500 people sign up to <a href="http://campaigns.cysticfibrosis.org.uk/ea-action/action?ea.client.id=1831&ea.campaign.id=46761&ea.tracking.id=web" target="_blank">our petition demanding access to new precisiontherapies like Orkambi and Kalydeco</a> just 48 hours after we announced it, you
know that this is an issue which touches people like no other.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Things
have come a long way since the 1960s when most children born with cystic
fibrosis failed to reach their fifth birthday – and there are now more adults
with cystic fibrosis in the UK than kids.</span></div>
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<span style="font-family: Verdana, sans-serif;">But
too many young people are dying early, too many families live with the grief
and the fear that cystic fibrosis brings, for us to let up until we have beaten
this cruel condition for good.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">And
this goal is now more than a distant hope. It is one that we now genuinely
believe is within our grasp.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Yet
the nearer this comes, so it is more important than ever that we increase our
efforts to shorten the time it takes to get there, because every day, every
week, every year we spend means more lives lost and more suffering families.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">The
development of a pipeline of new precision therapies that can extend life and
reduce the heavy treatment burden of cystic fibrosis is a major step forward,
and one that we want to see everyone benefit from as soon as possible.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">But
it will not happen unless we make it so, and that’s the purpose of <a href="http://www.cysticfibrosis.org.uk/stopping" target="_blank">our ‘Stoppingthe Clock’ campaign</a>. It will ensure the collective voice of the cystic fibrosis
community here in the UK is heard loud and clear by Vertex, the NHS,
politicians and others.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Access
to therapies that can make a difference to the lives of people with cystic
fibrosis is an essential part of our wider Fight for a Life Unlimited.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">This
fight means we are investing where it matters to generate the best scientific
and clinical ideas and to accelerate the process to ensure these benefit people
with cystic fibrosis directly.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">So,
as well as campaigning for vital therapies for today, we are investing in
world-class research centres tackling key issues like <a href="http://cysticfibrosis.org.uk/research-care/research/about-cystic-fibrosis-research/how-we-invest-in-research/strategic-research-centres/src-1" target="_blank">pseudomonas</a> and <a href="http://cysticfibrosis.org.uk/research-care/research/about-cystic-fibrosis-research/how-we-invest-in-research/strategic-research-centres/src-3" target="_blank">NTM</a>
infection to help generate the drugs of the future too.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">And
we are developing plans to provide more capacity for vital clinical trials to
take place in the UK and helping to shape ideas to develop <a href="http://cysticfibrosis.org.uk/research-care/clinical-care/smartcarecf" target="_blank">SmartCareCF</a> to use
new technologies and data to empower people with cystic fibrosis and, where
possible, keep them out of hospital.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">We
are developing new forms of information and support for people with cystic
fibrosis and their families – and shaping new programmes to promote activity
and empower and create new opportunities for young people living with the
condition.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">There’s
so much we are doing. But we cannot do it alone. <a href="https://cysticfibrosis.org.uk/donate" target="_blank">We need the funds to support this vital work</a>.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">And
we need the united voice of all those affected by cystic fibrosis, their
families, friends, clinical teams and others to help spread the word, amplify
our community’s voice and reach out to new supporters.<o:p></o:p></span></div>
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<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Together, we can and
will transform the lives of people with cystic fibrosis and achieve our goal of
a Life Unlimited. Please get on board and let’s make it happen!</span></span><br />
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><i><br /></i></span></span>
<span style="font-family: Verdana, sans-serif;"><i><span style="line-height: 107%;">Want to help us do more </span><span style="line-height: 17.12px;">transformational research and campaigning work? </span><a href="https://cysticfibrosis.org.uk/donate" style="line-height: 17.12px;" target="_blank">Donate now!</a></i></span>Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com41tag:blogger.com,1999:blog-2709654881835485353.post-2297239681617030842016-01-29T12:14:00.000+00:002016-01-29T12:14:05.519+00:00More Than Lungs - Digestion & CF<div class="Body">
<i><span lang="EN-US"><span style="font-family: Verdana, sans-serif;">On 8–9
February, the Trust will be hosting a research ‘sandpit’ exploring issues
related to digestion in cystic fibrosis, a meeting bringing together experts
from within and beyond the world of cystic fibrosis. Here Dr Jon King shares his
experience of the often overlooked impact of cystic fibrosis on digestion.<o:p></o:p></span></span></i></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">A few months ago, the Cystic Fibrosis Trust
approached me to be a part of a research meeting (sandpit) to discuss possible
research avenues for gastrointestinal (GI) problems in cystic fibrosis (CF). <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">The Trust is exceptionally good at viewing CF
and its care holistically, and I realised what an immense impact GI problems
have on my daily life – dare I say it, rather more so than my lungs! During a
committee conference call, we joked that perhaps CF is actually a condition of
the GI tract with some lung involvement!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">Of course when we think of CF, we think about
our lungs. When we fear the future, we worry about downward trends in
spirometry and worry about the need for transplants. We think about those times
when we have been caught out in public; short of breath, coughing and
spluttering, feeling quite awkwardly alien to everyone else around us. This is
CF… But is it?<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">Until 18 months ago, almost every morning for
over 10 years, I threw up acid and bile due to morning reflux. My face would
contort with the griping burning pain of my reflux between meals or whilst
eating certain foods. Triple therapy (pantoprazole, ranitidine and domperidone)
made no difference and when I had a pH manometry the surgeon did not believe
that I was complying with the drugs because the results were so extreme. I have
since had two operations on my stomach, the first failed, the second with the
addition of a metal mesh has worked well.<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">Reflux is annoying and can be really painful,
even leading to surgery; but to paraphrase Monty Python, apart from reflux,
what does the GI system do to us?<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">Well, what about Creon? Look at yourself. You’re
out with your friends, having a meal and you pull out a container and take more
tablets in one go than anyone round that table probably takes in a year. And
you have to do that almost every time you eat or drink. That is quite an impact
on our daily lives. Now that we are being deprived of 40,000s, I am on at least
70 25,000 capsules a day - it does allow me to perform my party trick of 24
tablets in one go though!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">How about insulin? CF-related diabetes requires
careful blood-sugar monitoring and insulin regimes, and yet we rarely really
think about it; we deal with it as an adjunct to everything else, like taking a
vitamin tablet.<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">Which brings me conveniently on to the small
bowel GI effect of CF: fat-soluble vitamin malabsorption. What about the long-term
effect of the half a dozen or so more tablets (vitamins A+D, vitamin E and a
calcium tablet) for that? We have regular dexa scans to monitor bone density
because with the additive effect of regular steroid use, we have a high risk of
developing osteopaenia and eventually osteoporosis. <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">Alas, we are only at the upper GI system – we still
have the large bowel to tackle yet. Distal intestinal obstructive syndrome
(DIOS): excruciating pain requiring hospital admission for pain relief and
rehydration, sometimes an operation. <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">And what about steatorrhoea? I don’t know about
the readers but I spend an awful long part of my day in the toilet. How many
times have you been stood over a toilet wiping for three, four or five times
longer than you were ever sat on it?! And how many times have you had to flush
the loo so many times that someone has looked at you strangely as you return to
the living room? Do you even dare repeat this ritual in a public loo? I commend
you if you do – you are braver than me! I live in a small flat with my
girlfriend. I spent all my savings refurbishing but ran out of money before I
could afford the en suite door – to say that this can be a mood killer is an
understatement!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">And our bowels can go completely the opposite
way with severe constipation, thanks to a perfect combination of sticky, fatty
steatorrhoeic stools and the thick mucus lining our guts. I once went 15 days
without going to the toilet at all. There can be advantages – I use all this
time on the toilet catching up with social media and replying to emails. <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">The constipation also affects our appetite intake,
which is essential for our calorie counts, and can even lead to regular
throwing up as the food has nowhere to go. Some readers may know that I cycled
to Barcelona last summer to raise money for the Cystic Fibrosis Trust. For five
days in a row I was so constipated that I was throwing up all my meals every
day - not a great way to tackle hundreds of kilometres of cycling. <o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">So how do we deal with this severe constipation?
Yet more medication. Maybe four or more sachets of movicol a day and an equal
amount of NAC. Perhaps the occasional day on the toilet after a gatsrograffin
or picolax or Klean prep clear out. These are medications strong enough to
clear the bowel out for surgical or camera test procedures and yet we use them
merely to return to regular bowel movements!<o:p></o:p></span></span></div>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">But still, apart from painful reflux, stomach
operations, dozens of tablets a day, insulin regimes, malabsorption of vital
vitamins, high risk of osteoporosis, occasional DIOS, irregular bowel habits,
embarrassing steatorrhoea, sachets of laxatives a day and occasionally needing
to set a day or two aside for a full bowel clear out, what does the GI system
do to us?!<o:p></o:p></span></span></div>
<div class="Body">
<br /></div>
<br />
<div class="Body">
<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">What oddities have you found with digestion and
cystic fibrosis? We can help those coming to the research sandpit really get to
grips with the subject – share your experiences with me, <a href="https://twitter.com/JonKingBYD" target="_blank">@JonKingBYD</a>, on Twitter
with the hashtag #DigestCF.</span><o:p></o:p></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com29tag:blogger.com,1999:blog-2709654881835485353.post-66539003037815527172016-01-04T10:25:00.000+00:002016-01-04T16:56:04.572+00:00A 2016 Unlimited<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>The New Year is here! We're ready and raring to go in our fight for a life unlimited for everyone affected by cystic fibrosis!</i></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>Our Chief Executive, Ed Owen, lays out what will be an exciting year ahead and how you can resolve to help us throughout the year.</i></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBBZ672gdmC84K2VUY23VqTWSulwM0AsWEfg7yOp5fdNoeq-Z4o6pU9gCosgIu9OfTVsN59tXAc3disn3Ni0qNtyMbfg5xNMEzJylkESrJXpU0XiTSKmItJ58Q-GTHUQBombbmsJkpiyk6/s1600/DSC_0479+ED2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBBZ672gdmC84K2VUY23VqTWSulwM0AsWEfg7yOp5fdNoeq-Z4o6pU9gCosgIu9OfTVsN59tXAc3disn3Ni0qNtyMbfg5xNMEzJylkESrJXpU0XiTSKmItJ58Q-GTHUQBombbmsJkpiyk6/s200/DSC_0479+ED2.jpg" width="200" /></a></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We are at a unique moment in the history of cystic fibrosis
– and 2016 must be a year of progress towards our ultimate goal.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">New transformational therapies, exciting research programmes
and breakthroughs in genetic science are bringing closer the day when we will
beat this cruel condition for good. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">And we, the Cystic Fibrosis Trust, will be unveiling new
ambitious plans to help ensure our united CF community seize the extraordinary
opportunities that exist to remove the limits CF imposes on all those whose
lives are affected.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">But, as all of us touched by cystic fibrosis know, with hope
comes grief and pain.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Last year began for me with the funeral of Emily Thackeray,
a shining star who dedicated her life to campaign on issues like organ donation
– and ended with the dreadful news that 14-year-old Dylan Samuels had passed
away.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">These, and all the other individual stories of those who
have lost their lives to cystic fibrosis, are the reasons we enter this year
with even more determination and focus to seize this special moment than ever
before.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">2015 saw major steps forward.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The decision of the European Medicines Agency in November to
approve the use of Orkambi for those aged 12 and over with the most common CF
mutation in the UK (F508del) was very good news – as was its decision to extend
the use of Kalydeco to children under six and to adults with the R117H
mutation.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">But this does not guarantee access, and this year our ‘Stopping
the Clock’ campaign will need to step up a gear to ensure both the NHS and
Vertex do the right thing so more people with CF are given access to these
gene-modifying therapies.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">It is encouraging, too, to hear of the progress other
pharmaceutical companies are making to develop transformational drugs, as well
as further Vertex work to bring forward treatments affecting other mutations.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">2015 also saw the long awaited results of the Phase 2b
clinical trial of a gene therapy developed by the Gene Therapy Consortium (GTC)
here in the UK. This study was only possible because of the extraordinary
support of the CF community over the last 15 years, and the results
demonstrated for the first time the potential for gene therapy as a potential
cystic fibrosis treatment.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We hope that a commercial partner can be found to take on
this work in 2016 and, as a result of the continued generosity of all our
supporters, the Trust is continuing to fund the GTC’s longer term ‘Wave 2’ work
to develop a potentially more impactful gene therapy product using a viral
agent to deliver the genetic material to the lungs of people with cystic
fibrosis.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">2015 saw extraordinary developments in gene-editing
technology as a potential for treating, and perhaps curing, conditions like
cystic fibrosis.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The Trust is already investing in this field of research and
looking to build new collaborations to exploit the opportunities it presents. We
are also joining other groups to ensure we have the right regulations in place
to enable more vital research to take place to advance gene-editing work.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We continue to invest in research across a range of vital
areas – from transformational science to beat cystic fibrosis at source to work
confronting challenges like pseudomonas and NTM infections.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We will be expanding our research portfolio in 2016, and
looking to develop our commercial collaborations with industry to ensure good
ideas have every chance of progressing to real-life treatments for people with
cystic fibrosis.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">And we are working well beyond research too.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We continue to work closely with clinicians and CF teams
across the UK to ensure all with cystic fibrosis have access to the best
possible care in the NHS.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">To do so, we will continue to lobby to ensure proper NHS
funding is directed to support specialist CF centres – and we are soon to
announce new funding to support initiatives that promote innovation and
excellence in CF centres.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">These will all be part of a range of new activities we will
be unveiling in the next few months as we seek to raise our game and our
ambitions to improve and transform the lives of those we are here for.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">But we cannot do it alone. We need your support whether
through fundraising or donating, through campaigning or giving up your time to
volunteer.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">2015 saw too many young people dying of cystic fibrosis. We
have no time to lose. The support of the CF community is extraordinary. But
there is much more to be done if we are to move closer to beating CF and ensure
a life unlimited.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">As part of this challenge, we are asking you to make
resolutions for the New Year that can help make a difference. I, for one, will
make a clear commitment that the Trust will build on the improvements we have
been introducing to make 2016 an historic year in our work to create a
step-change in the impact we make.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">I will also resolve to try and find the time to see more of
the greatest football team in the world. That’s Manchester City, just in case
you didn’t know!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><i>Find our more about how you can use your New Year's resolutions to join the fight for a life unlimited at <a href="http://www.cysticfibrosis.org.uk/resolutions">www.cysticfibrosis.org.uk/resolutions</a></i></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com197tag:blogger.com,1999:blog-2709654881835485353.post-65175679125990010542015-12-06T13:14:00.002+00:002015-12-06T13:14:55.547+00:00Reaching Out From Parliament - Getting CF Heard<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><i>The Cystic Fibrosis Trust has been working closely with the Outreach team in the UK Parliament to look at how we can continue to ensure cystic fibrosis and the issues of the CF community remain on the political agenda. As part of this, we're teaming up with Outreach team to host a 'digital discussion' with Ian Austin MP, ahead of a debate on access to precision medicines. Lucinda Blaser of the Outreach Team explains more.</i></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">Hi!
I’m Lucinda. I work in Outreach at the House of Commons.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">I
work with communities in their digital spaces to share ways for them to get
involved in the work of Parliament and have their say on issues that are
important to them. We are trying to break down perceived barriers to engaging
with Parliament and one of the ways to do this is for us in Outreach to come to
you both in person or digitally!<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">One
of the ways the House of Commons is encouraging public participation with
debates that are happening is through a digital debate. Digital debates
are an outcome of the <a href="http://www.parliament.uk/business/commons/the-speaker/speakers-commission-on-digital-democracy/" title="http://www.parliament.uk/business/commons/the-speaker/speakers-commission-on-digital-democracy/
Ctrl+Click or tap to follow the link">Speaker’s Commission on
Digital Democracy</a>,
as part of their investigation into opportunities digital technology can bring
for parliamentary democracy. In their <a href="http://www.parliament.uk/business/commons/the-speaker/speakers-commission-on-digital-democracy/ddc-news/digital-democracy-commission-report-publication/">final report</a> it was<span style="color: #212121;"> stated: </span><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><span style="color: #212121;">“We believe the public want the opportunity to have their say in
House of Commons debates; we also believe that this will provide a useful
resource for MPs and help to enhance those debates. We therefore recommend a
unique experiment: the use of regular digital public discussion forums to
inform debates held in Westminster Hall.”</span><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">Digital
discussions are a way for people to get involved in a debate and discuss their
thoughts and experiences with the MP who has proposed that debate. This is a
chance for the public to be heard by MPs taking part in the debate and to find
out more about the parliamentary process and what to do after this debate has
happened.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">Digital
debates are opening up the process and helping the public to have their say
bringing together information from charities, organisations and the House of
Commons Library to one space for the public to discus.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">On
Monday 8 December the cystic
fibrosis community will have the chance to come together for a digital
discussion, to share their stories about what it is like living with CF and
what access to drugs means for you. Ian Austin MP will be taking part in the
debate, and will use your stories to inform a special debate he is hosting in
Westminster a week later, which you will be able to stream online.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<br />
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">Please take part in the digital discussion
on Monday 7 December and make sure your voice is heard! </span><span style="font-family: Arial, sans-serif; font-size: 10pt;"><o:p></o:p></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><i>You can join in the digital discussion with Ian Austin MP over on Twitter from 5-6pm on Monday 7 December by using the hashtag #CFDebate</i></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com16tag:blogger.com,1999:blog-2709654881835485353.post-79768674183949874942015-11-12T16:20:00.000+00:002015-11-12T16:22:36.302+00:00Precision Medicines - Why?<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;"><i>Precision medicine is the talk of today, with <a href="http://www.bbc.co.uk/news/uk-wales-34789743" target="_blank">a cancer drugs fund for Wales</a> in the news and our own <a href="http://cysticfibrosis.org.uk/news/clock-stopping-feats" target="_blank">'Stopping The Clock' campaign launching</a>, calling for fair and prompt access to precision medicine for people with cystic fibrosis.</i></span></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;"><i><br /></i></span></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;"><i>But what is 'precision medicine' and why does it matter? Dr Janet Allen, Director of Strategic Innovation, digs deeper.</i></span></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;">On 20 January 2015, President Obama made this announcement
in his State of the Union address to the US nation:</span><span style="line-height: 107%;"> </span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<b><span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">“Tonight,
I’m launching a new Precision Medicine Initiative to bring us closer to curing
diseases like cancer and diabetes – and to give all of us access to the
personalised information we need to keep ourselves and our families healthier.”
<o:p></o:p></span></span></b></div>
<div class="MsoNormal">
<b><span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></b></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyXOOx8ZstFijuCJGW1I_4bZ1BWopnKdTd3Paaas4g7RHWVL8_gRt6CDCOf5dSbIs1jOVLbsSErS9ei4xxzpsuuT3tLN7z36lS9zpf6hFwpU7MbwUD52ocTReIb9Cz0g3_GBJh0Wna63X6/s1600/WP_20151102_09_52_33_Pro.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="110" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyXOOx8ZstFijuCJGW1I_4bZ1BWopnKdTd3Paaas4g7RHWVL8_gRt6CDCOf5dSbIs1jOVLbsSErS9ei4xxzpsuuT3tLN7z36lS9zpf6hFwpU7MbwUD52ocTReIb9Cz0g3_GBJh0Wna63X6/s200/WP_20151102_09_52_33_Pro.jpg" width="200" /></a></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">This was an exciting, bold statement that frames the future
of treatments where individuals are treated as individuals. Recently Francis
Collins, Director of the USA National Institute of Health, gave his vision of
how this will be delivered, at the Faster Cures conference at the Milken
Institute (pictured). He described the programme as “big, hairy and audacious – and so it
should be.” <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">Dr Collins argued that the time is right to do this mainly
as a result of technologies coming together that will be able to inform
treatments; for example genomics, environmental effects, personal wearable
sensor technology. In the past, new treatments were approved based on the law
of averages. For instance, how does this treatment lower the average person’s
cholesterol compared to no treatment? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<b><span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></b></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><b><span style="line-height: 107%;">We
need to move away from this to a state where the right drug is given to the
right patient at the right time to achieve the right effect.</span></b><span style="line-height: 107%;"> <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">This is the aim of precision medicine; we need to convert
our thinking on how to keep people healthy and not see healthcare as only
having a role in treating ill-health. A key component in the development of
precision medicine is to engage with people as equal partners and not as
subjects for study. This thinking will transform the way we do scientific
research and is already creating the concept of ‘citizen scientists’. All of
this will not happen overnight but the very mention of precision medicine in
the State of the Union address creates momentum and it is clear that the
National Institutes of Health are up for the challenge and ready. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">If you think that precision medicine is only for the ‘big’
conditions such as heart disease and cancer, see the extended quote from the
State of the Union address: “21<sup>st</sup> century businesses will rely on
American science, technology, research and development. I want the country that
eliminated polio and mapped the human genome to lead a new era of medicine –
one that delivers the right treatment at the right time. In some patients with
cystic fibrosis, this approach has reversed a disease once thought
unstoppable.” <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;">These are truly interesting and exciting times and we need
to ensure that cystic fibrosis remains in the vanguard of developing precision
medicine to benefit each and every individual with the condition. This is
audacious but that shouldn’t stop us. As another speaker said:<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;">·<span style="font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="line-height: 107%;">Don’t let perfection be the enemy of good.<o:p></o:p></span></span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;">·<span style="font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="line-height: 107%;">Don’t be afraid of getting started.<o:p></o:p></span></span></div>
<div class="MsoListParagraphCxSpMiddle" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span style="line-height: 107%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<!--[if !supportLists]--><span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;">·<span style="font-stretch: normal; line-height: normal;">
</span></span><!--[endif]--><span style="line-height: 107%;">Don’t be afraid to learn.<o:p></o:p></span></span></div>
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<i><span style="font-family: "verdana" , sans-serif;"><span style="line-height: 107%;">Find out more about our 'Stopping The Clock' campaign at <a href="http://www.cysticfibrosis.org.uk/stopping">www.cysticfibrosis.org.uk/stopping</a>.</span></span></i></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com38tag:blogger.com,1999:blog-2709654881835485353.post-54337819560243630792015-11-09T10:33:00.000+00:002015-11-09T10:33:08.040+00:00Gene editing: a therapy with masses of potential, but not only in treating cancer…<i style="mso-bidi-font-style: normal;"><span style="font-family: "Verdana",sans-serif; font-size: 10pt;">Last
week gene editing hit the news with the story of young leukaemia patient Layla
and a pioneering treatment at Great Ormond Street. Here Dr Anoushka de Almeida,
Head of Research at the Cystic Fibrosis Trust, talks about the science behind
the story, and the ground-breaking work being funded by the Trust into using
genetic editing for treating cystic fibrosis. <o:p></o:p></span></i><br />
<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"></span><br />
<span style="font-family: "Verdana",sans-serif; font-size: 10pt;">We have recently heard on the media of clinicians
at Great Ormond Street Hospital using the revolutionary technique of gene
editing to treat a little girl, Layla, diagnosed with an aggressive cancer of
the bone marrow. All other conventional treatments failed and this was Layla
and her family’s last hope – and it seems to have worked. <o:p></o:p></span><br />
<br />
<div class="MsoNoSpacing" style="margin: 0cm 0cm 0pt; text-align: justify;">
<span style="font-family: "Verdana",sans-serif; font-size: 10pt;">So what did they do to produce such a
miracle? Layla’s doctors teamed up with researchers at UCL, led by Prof Waseem
Qasim, who has developed a novel approach to gene editing in immune cells (T-cells).
This approach involves taking donated T-cells from a healthy person, modifying
the genome using gene editing to enable them to attack cancer cells, and then
introducing them into the body. Previously, these cells had only been tested in
mice, so Layla was the first human to receive them. The <span style="mso-spacerun: yes;"> </span>gene editing technique they used involved
using a pair of 'molecular scissors’, a kind known as TALEN proteins, to
‘switch off’ certain receptors, making sure that the modified T-cells leave the
healthy cells alone and only attack leukaemia cells. Genes were also edited out
to make the new cells ‘invisible’, so that they wouldn't be destroyed by other
leukaemia drugs.<o:p></o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"><o:p> </o:p></span></div>
<span style="font-family: "Verdana",sans-serif; font-size: 10pt;">It is still early to say whether Layla has
been completely cured. The pharma company Cellectis, who collaborated with
Qasim, plans to start full clinical trials early in 2016, the results of which
will hopefully confirm that this isn’t just a one-off. If they are successful,
this is a huge step forward for treating leukaemia and other cancers, as well
as other conditions…<o:p></o:p></span><br />
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;">This leads me on to talking about the
research that’s currently underway using gene editing in cystic fibrosis…<o:p></o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;">As we know, cystic fibrosis</span><span style="font-family: "Verdana",sans-serif; font-size: 10pt; mso-fareast-font-family: "Times New Roman";"> is caused when there are mutations in both copies of the
CFTR gene. Recent studies have shown that the most common CF-causing mutation,
F508del, can be corrected using a gene editing technique called ‘CRISPR/Cas9’ (a
different method to what they used for Layla – but principally the same). The
first step in this technique is to cut out the dodgy bit of genome using the
‘molecular scissor’ complex, and the second step is to repair it by using a
donor DNA molecule containing the correct, non-faulty sequence. Now, this all
works well in isolated cells outside the body, but the efficiency of the repair
is very low. Also, difficulty arises when delivering both the molecular scissor
complex <b style="mso-bidi-font-weight: normal;">and</b> the donor DNA into the
correct place in the body.<o:p></o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt; mso-fareast-font-family: "Times New Roman";">A different approach is being investigated by </span><span style="font-family: "Verdana",sans-serif; font-size: 10pt;">Dr Patrick Harrison and colleagues at
University College Cork. This work, which the Cystic Fibrosis Trust is
co-funding with the Cystic Fibrosis Foundation in the US, involves </span><span style="font-family: "Verdana",sans-serif; font-size: 10pt; mso-fareast-font-family: "Times New Roman";">focusing on a small group of three rare CF-causing mutations.
(These mutations basically disrupt the processing of the messenger RNA molecule
which is normally needed to make the CFTR protein in cells). In all three
cases, there is an <b style="mso-bidi-font-weight: normal;">extra</b> sequence in
the genome which interferes with the normal processing. Dr Harrison’s team is exploring
using the gene editing approach simply to cut out this extra piece in the
genome region that causes the problem. This CRISPR ‘knock-out’ strategy is more
efficient than repair, and only requires delivery of just the molecular scissor
complex; no donor DNA is required. <o:p></o:p></span></div>
<br />
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt; mso-fareast-font-family: "Times New Roman";">Dr Harrison’s
group has teamed up with groups in Europe and the US to take this work further
so that they can determine if all this hard work eventually leads to the normal
CFTR protein being produced, resulting in normal functioning of the particular lung
cells in cystic fibrosis. <o:p></o:p></span></div>
<br />
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;">So, off the back of the break-through in
little Layla, gene editing has re-entered the limelight. I</span><span style="font-family: "Verdana",sans-serif; font-size: 10pt; mso-fareast-font-family: "Times New Roman";">t can be safely said that it is not only a promising
prospect for cancer such as leukaemia, as her case unquestioningly
demonstrates, but also for genetic conditions like cystic fibrosis. The Cystic
Fibrosis Trust is fully supportive of this therapy and sees its exciting
potential, and we would be keen to engage in further cutting-edge research in
this area of genetic therapies.<o:p></o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"><o:p> </o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"><o:p> </o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"><o:p> </o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"><o:p> </o:p></span></div>
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<span style="font-family: "Verdana",sans-serif; font-size: 10pt;"><o:p> </o:p></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com18tag:blogger.com,1999:blog-2709654881835485353.post-63492228820090675302015-11-06T16:10:00.003+00:002015-11-06T16:10:53.506+00:00Reflections on the Disability Discrimination Act <span style="font-family: "verdana" , sans-serif;"><em>To mark this week's celebrations of the Disability Discrimination Act, our Policy Manager Nick Medhurst looks at what this has meant for those with cystic fibrosis.</em></span><br />
<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;"></span></span><br />
<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">It is 20 years ago this week that the Disability
Discrimination Act 1995 was brought into law in the UK and it is being
celebrated today as a watershed moment for equality.<o:p></o:p></span></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">It marks a moment in time when we, as a society, recognised
our collective responsibility to actively support people who deal with daily
challenges from a health condition or disability to achieve their ambitions.<o:p></o:p></span></span></div>
<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">The change in the law that it brought about, now covered by
the Equality Act 2010, meant that for the first time people could request, and
legally expect, for reasonable adjustments and arrangements to be made for them
at work and in wider society to overcome barriers and maximise their potential.<o:p></o:p></span></span></div>
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">So what has this meant for people with cystic fibrosis?<o:p></o:p></span></span></div>
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">We recently surveyed 1426 people from our community about
cystic fibrosis, their treatments, and what matters to them – perhaps you took
part – and we are very humbled by the response we got and excited to share our
findings with those who took part in the coming weeks and use those results, in
every way we can, to make a positive difference to people’s lives.<o:p></o:p></span></span></div>
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">One message that we received loud and clear was that
managing cystic fibrosis is time-consuming (sometimes all-consuming),
disruptive and sometimes impossible to balance with leading the lives that we
hope for.<o:p></o:p></span></span></div>
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">When fighting to keep as well as possible, people with
cystic fibrosis will face hundreds and thousands of small challenges every
week.<o:p></o:p></span></span></div>
<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">The Equality Act describes a disability as a physical or
mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on
your ability to do normal daily activities<o:p></o:p></span></span></div>
<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">However, when most people hear the words ‘disability’ or
‘disabled’, I can’t imagine the image of someone with cystic fibrosis
immediately pops into their head.<o:p></o:p></span></span></div>
<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">That seems to work both ways and many people with cystic
fibrosis don’t always see the fit either. I’ve even heard that some people,
likely eligible, choose not to apply for Disability Living Allowance (DLA)
because they do not feel ‘disabled’.<o:p></o:p></span></span></div>
<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">The power of the Equality Act, and its predecessor, the DDA,
is that it does not label us. It protects us, supports us and empowers us, when
we can be at our most vulnerable.<o:p></o:p></span></span></div>
<span style="font-family: "verdana" , sans-serif;"></span><br />
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<span style="font-family: "arial";"><span style="font-family: "verdana" , sans-serif;">For people with cystic fibrosis, it should be celebrated for
the recognition it gives that people who face such challenges in their daily
lives can achieve so much more if they live in a society which recognises and
acts on unnecessary barriers to fulfilling ambitions.<o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;">However, we recognise that people with cystic fibrosis can and do still face discrimination and we would be interested in hearing about any challenges you have faced. </span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com5tag:blogger.com,1999:blog-2709654881835485353.post-30573615493462424612015-10-30T18:02:00.004+00:002015-10-30T18:02:52.577+00:00Looking back on Young People's Week<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Last week we held our first Young People’s Week on social
media, and we want to thank you all for your fantastic contributions. There was
some great discussion about the challenges of juggling CF with everything else
young people have to deal with, and we received some lovely comments from
parents who were encouraged to hear young people talking openly about their
condition and how they handle the demands of cystic fibrosis. We particularly
want to say a huge thanks to Holly Van Geffen and Charles Michael Duke for
their takeover day on Wednesday, which provided an honest and often hilarious
insight into life with CF from two very different perspectives (if you haven’t
seen Charles’ video on how to tell people you have CF, we strongly recommend
you check it out below:</span></div>
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<span style="font-family: Verdana, sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/w5fteaG_z4w/0.jpg" src="https://www.youtube.com/embed/w5fteaG_z4w?feature=player_embedded" frameborder="0" allowfullscreen></iframe></span></div>
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<span style="font-family: Verdana, sans-serif;">We launched our call for young advisors to help guide our
programme of work with young people – over on Hack it Up we’re asking you to
tell us what you think the role of an advisor should be and seeking ideas on
how we can involve more young people with CF in our work, so if you’re aged 16–25
<a href="https://hackitup.crowdicity.com/category/5024" target="_blank">get on over and have your say</a>.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">We also posted about <a href="http://www.cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/helen-barrett-bright-ideas-awards" target="_blank">our Bright Ideas Awards</a> where young
people with CF who have a business idea can apply for small grants to help them
turn their ideas in to reality.</span></div>
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<span style="font-family: Verdana, sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><a href="http://cftrust.blogspot.co.uk/2015/10/education-careers-cf-zainabs-story.html" target="_blank">Zainab Nasim’s blog</a> on graduating from uni with a First in
Pharmacy was inspiring stuff – as she says, it was all down to “hard work,
determination and motivation”. We’ll shortly be asking more young people to
tell us about educational experiences and seeking some young ambassadors to
inspire other people with CF to achieve their goals.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">As you may have seen, we’re currently recruiting for a <a href="https://www.cysticfibrosis.org.uk/who-we-are/working-with-us/youth-empowerment-officer" target="_blank">Youth Empowerment Officer</a>, to join the team at our office and help us create
an exciting and innovative programme. We’re looking for a creative and upbeat
individual with a genuine desire to support young people with CF to live their
lives unlimited.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">The week marked the start of our new programme of work with
young people, but it’s only the beginning. We want to keep up the conversations
to find out what’s really important to you – and how we can empower young
people to live their lives unlimited by cystic fibrosis. Next steps will be to set up our youth advisory
group to ensure all our work with young people is fully informed by their
views, and also to develop our young ambassadors programme, as well as starting
to develop some exciting new projects and initiatives led by young people in
the new year. We'll be making young people's week a regular feature too so keep
an eye out for ways you can get involved as we build on the great feedback we
received in Young People's week. So please continue to
share your views with us.</span></div>
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Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com2tag:blogger.com,1999:blog-2709654881835485353.post-9488240327233214992015-10-21T08:06:00.000+01:002015-10-21T08:06:05.548+01:00Young People's Takeover: Charles Micheal Duke<div class="Default">
<span style="font-family: Verdana, sans-serif;">Hi there! <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">My Names Charles Michael Duke,
I'm a singer/actor from Bournemouth. I’m currently 20 years old, and I have
cystic fibrosis. Oh, and I've been waiting for a double lung transplant since
April 2015... <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">I was diagnosed with cystic
fibrosis at birth and had a fairly healthy childhood, with around one admission
for intravenous (IV) antibiotics a year. However, in 2014 it all started to go
a bit downhill. I started to be admitted more regularly, and my lung function
was rapidly declining. <o:p></o:p></span></div>
<div class="Default">
<br /></div>
<div class="Default">
<span style="font-family: Verdana, sans-serif;">Since 2014 I have been admitted
several times,, spending around seven out of 12 months in hospital. In June
2014 it was decided that my health had gotten to a point where we needed to
consider lung transplantation, so I was refereed for assessments.
Unfortunately, my health didn't improve and I went through the assessments and
was listed in April 2015, and have been waiting for a double lung transplant
since. I’m currently spending two weeks in hospital in the hope that this will
keep me 'well enough' for when my call comes, and I will be able to survive the
operation and get through the rehab process. <o:p></o:p></span></div>
<div class="Default">
<br /></div>
<span style="font-family: Verdana, sans-serif;">Being a teenager with CF for me wasn’t too
difficult; my CF never got in the way, and I was able to fit treatments around
socials and going to friends’ houses. They were all aware of my condition and
were accommodating of it. However, with my recent decline, had my health been
in this state when I was younger it would have made things much harder. I can’t
always go as out as I’m not well enough, I don’t do sports so would have missed
out on lots of socials that involved things like football down the park. I
wouldn’t have been able to stay out or over at a friends as I now require
oxygen at night. Although my health isn’t in the best of states now, I would
rather it happen in this stage of my life than my childhood/teenage years – I
was able to have a childhood, which some people with CF aren’t able to say.</span>Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com1tag:blogger.com,1999:blog-2709654881835485353.post-78032998459751984112015-10-21T07:42:00.000+01:002015-10-21T07:42:00.306+01:00Young People's Takeover: Holly van Geffen<div class="separator" style="clear: both; text-align: center;">
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeIg165O2I09sV5OkqfbobMMRhNOtL0rS_g8nVXWa4Oxse9kHlAvMPE44aPr1Pc7gGdqIf3o-J9PyPN8dVoYuwVYBxFjK2ImJNBY7hDgW3dbiS3_JcDmHc5QsWrwlxNfKthii9T9_panWr/s1600/baby+hvg.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeIg165O2I09sV5OkqfbobMMRhNOtL0rS_g8nVXWa4Oxse9kHlAvMPE44aPr1Pc7gGdqIf3o-J9PyPN8dVoYuwVYBxFjK2ImJNBY7hDgW3dbiS3_JcDmHc5QsWrwlxNfKthii9T9_panWr/s1600/baby+hvg.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;">Baby Me</span></td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaX6XsJQbSO9s7jUXWXFxQ3p-gkHBBGnRVb7z-iGAq8WoQesCVyaDZQhQYsY1Bs7U6hBD8oQES5ayVAF_c7g666E9eQre0Ua6Ci-0UflzqioBgfOHk02cWOBCsy5LoYNM1Hq5xxyl9Z9Zl/s1600/hvg+23.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaX6XsJQbSO9s7jUXWXFxQ3p-gkHBBGnRVb7z-iGAq8WoQesCVyaDZQhQYsY1Bs7U6hBD8oQES5ayVAF_c7g666E9eQre0Ua6Ci-0UflzqioBgfOHk02cWOBCsy5LoYNM1Hq5xxyl9Z9Zl/s1600/hvg+23.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me now, aged 23</td></tr>
</tbody></table>
<span style="font-family: Verdana, sans-serif;">Hello <span style="color: #1f497d;">e</span>veryone!<br />
<br />
So I have been asked to do a social media take<span style="color: #1f497d;">-</span>over
today with the Cystic Fibrosis Trust to talk about being a young person with CF
and the issues we face<span style="color: #1f497d;">,</span> and to talk about
the help and support we need.<br /><br />
I am Holly and <span style="color: #1f497d;">I </span>am 23 years old. I was
diagnosed when I was <span style="color: #1f497d;">six</span> weeks old and have
the most common delta f508 mutation. In February 2015<span style="color: #1f497d;">,</span>
aged 22<span style="color: #1f497d;">,</span> I received a double lung transplant<span style="color: #1f497d;">;</span> I had been waiting for <span style="color: #1f497d;">two</span>
years<span style="color: #1f497d;">,</span> since the age of 20.<br /><br />
<br />
I think I will begin my story from the age of 12 as I think is the age I became
fully aware of my CF and how it affected me. I was lucky as a child and only
required <span style="color: #1f497d;">intravenous antibiotics (IVs) </span> twice<span style="color: #1f497d;">,</span> aged <span style="color: #1f497d;">five</span> and
11! So up until the age of 12, CF was very much in the background of my life.
As I moved to high school, I had to take on more responsibility for my own CF
treatment. Although I still had a helper who would do my lunch time
physiotherapy in the form of postural drainage with percussion, I was now in
charge of my own enzymes at lunch time (<span style="color: #1f497d;">a</span>t
primary school my helper would also do that side of things for me). In the lead
up to having this responsibility<span style="color: #1f497d;">,</span> me and<span style="color: #1f497d;"> </span>mum discussed what I would have in my packed
lunch and the amount of enzymes I would take with each item<span style="color: #1f497d;">,</span> so I felt well prepared and never had an issues
of taking too many or not enough!<br />
<br />
Outside of school, particularly in the evenings, I began to think doing my
treatment was a chore and my compliance dropped. It was around this age that
the hospital wanted to change my usual physio technique of my parents giving me
postal drainage with percussion to using a breathing device. This gave me the
control and responsibility of doing my physio which they saw as a good step to<span style="color: #1f497d;">ward</span> independence<span style="color: #1f497d;">.</span>
I tried the Pep mask and the Accapella, but I unfortunately didn't feel the
same benefit and that<span style="color: #1f497d;"> I did with</span> postural
drainage<span style="color: #1f497d;">,</span> so would only do the physio
sessions half heartedly! By the age of 14 my compliance was so bad with physio
that my mum and dad fundraised and we were able to buy 'The Vest airway
clearance system'. It was the best thing we ever did and an attitude changing
moment for my young teenage self. The vest allowed me to still have
independence<span style="color: #1f497d;"> in</span> doing my physio<span style="color: #1f497d;">,</span> but not so much responsibility in carrying out
the correct technique. Instead<span style="color: #1f497d;">,</span> I could sit
and watch TV or read a book whilst the vest did the work for me<span style="color: #1f497d;">.</span> <span style="color: #1f497d;">I</span>t sounds
lazy<span style="color: #1f497d;">,</span> and it was, but that is the teenage
brain for you! There are a lot of mixed opinions on 'The Vest'<span style="color: #1f497d;">,</span> but for me it was a saviour in my compliance to
treatments and was by far better than doing no physio at all. <br />
<br />
At the age of 14 I took up cheerleading in my free time<span style="color: #1f497d;">;</span>
I trained <span style="color: #1f497d;">for seven</span> hours a week over the
course of <span style="color: #1f497d;">three</span> different nights<span style="color: #1f497d;">.</span> <span style="color: #1f497d;">I</span>t was
great that I found a 'sport' that I loved and was passionate about at an age
where often exercise decreases because it isn't cool! I would really recommend
cheerleading to CF girls as a hobby that is exercise based but has a great
social side to it and sense of achievement. I was a cheerleader for <span style="color: #1f497d;">five</span> years and took part in competitions with my
team nationwide! It definitely kept me better than I would have been if I'd
done no physical activity<span style="color: #1f497d;">.</span> <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhodDf21lX1ilJoR33gFhRqM_PaRuxcqurfk0ETboghXtJt3GASviGkiPGN89DqXcwpJtWmagE5gMuLVHAC6OLfU4CVvTRu9soUenfvEE2cYXUse9jQ08UxTK5lI8SOSh99fSs1BLMW3nHS/s1600/cheerleading%252C+centre+with+my+leg+in+the+air.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhodDf21lX1ilJoR33gFhRqM_PaRuxcqurfk0ETboghXtJt3GASviGkiPGN89DqXcwpJtWmagE5gMuLVHAC6OLfU4CVvTRu9soUenfvEE2cYXUse9jQ08UxTK5lI8SOSh99fSs1BLMW3nHS/s200/cheerleading%252C+centre+with+my+leg+in+the+air.jpg" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="text-align: start;"><span style="font-size: x-small;">Me in the centre with my leg up! I was a flyer!</span></span></td></tr>
</tbody></table>
My health remained stable until I was 15 and I was diagnosed with atypical <i><span style="color: #1f497d;">M</span>ycobacterium abscessus</i>. Until this diagnosis
I had mainly had issues with ABPA (allergic response to Aspergillus fungus)<span style="color: #1f497d;">,</span> which was treated with high<span style="color: #1f497d;">-</span>dose steroids and anti<span style="color: #1f497d;">-</span>fungal
medicine. My symptoms changed from a wheezy tight chest with the ABPA to a
loose crackly chest full of mucus with the mycobacterium. <br />
<br />
This change in symptoms and the <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbaOFd0a1TwOCxcSj-yZABgBxVO6uuGJ3Zr27lDzm4NdrPoCcN8E8UeV6b_9KO8hzPaSuDKUB4GykQxCzJhD9nPFu4FnYMszfbqMQfsiPkJAM6kcvos5H0mgKlWa-Cp7BlKu2HCwiuuEm7/s1600/with+the+cheerleading+trophy+we+won.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbaOFd0a1TwOCxcSj-yZABgBxVO6uuGJ3Zr27lDzm4NdrPoCcN8E8UeV6b_9KO8hzPaSuDKUB4GykQxCzJhD9nPFu4FnYMszfbqMQfsiPkJAM6kcvos5H0mgKlWa-Cp7BlKu2HCwiuuEm7/s200/with+the+cheerleading+trophy+we+won.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With the trophy we won</td></tr>
</tbody></table>
infections in my lungs prompted a change in my
treatments. IV's became a regular occurrence, because of this I had a <span style="color: #1f497d;">p</span>ortacath fitted because my veins couldn't cope
with the long lines!<br />
<br />
Between the ages of 15 <span style="color: #1f497d;">and</span> 19 the regularity
of IVs increased from every <span style="color: #1f497d;">six</span> months, to
every <span style="color: #1f497d;">three</span> months, to every month. At the age
of 19 I was told I no longer grew the mycobacterium but was kept on a
maintenance dose of <span style="color: #1f497d;">the </span>oral antibiotics it
was sensitive to just in case.<br />
<br />
With the mycobacterium gone my lungs became infected for the first time in my
life with <i>Pseudomonas</i> <i><span style="color: #1f497d;">a</span>eruginosa</i>.
Now the competition <span style="color: #1f497d;">with</span> the mycobacterium
was gone, the <span style="color: #1f497d;">P</span>seudomonas took full
advantage of colonising my lungs! I was unfortunate in culturing an extremely
antibiotic<span style="color: #1f497d;">-</span>resistant strain of Pseudomonas<span style="color: #1f497d;">,</span> so treating it was very difficult. My lung
function had dropped to 22% in July 2013 and I was referred for a double lung
transplant. I was reliant on permanent IV's for over <span style="color: #1f497d;">two</span> years to<span style="color: #1f497d;"> be in a</span>
stable condition until I got my transplant. Just a weekend off could cause the
infection to flare up to the point I was bed ridden. My doctors came up with <span style="color: #1f497d;">three </span>antibiotic cocktails to rotate every <span style="color: #1f497d;">two</span> weeks<span style="color: #1f497d;">;</span> I
was lucky my mum was my full<span style="color: #1f497d;">-</span>time carer so
could do the IVs for me in the comfort of my own home instead of being in
hospital permanently. In the <span style="color: #1f497d;">two</span> years
leading up to my transplant I required oxygen and taught myself to insert a
naso-gast<span style="color: #1f497d;">r</span>ic feeding tube for overnight
feeding.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">
Since my transplant my routine has changed massively and I no longer need a lot
of the CF treatments anymore. I don't have physio, nebulisers, inhalers, IV's
or oral antibiotics anymore. I do however have to take anti-rejection
medication and exercise is a key part of keeping my new lungs well and raising
my lung function to its full potential.<br />
<br />
Now you have a brief history about myself, I would like to welcome you to ask
me questions about anything you like, from puberty to socialising<span style="color: #1f497d;">,</span> and letting people know about my CF to diet
ideas<span style="color: #1f497d;"> – </span>basically anything CF or transplant
related you can think of<span style="color: #1f497d;">,</span> and I will try my
best to answer from my own experiences.<br />
<br />
I will be posting more issues I feel passionate about during the day!<br />
<br />
Thanks for reading<br />
<br />
Holly<br />
x </span><span style="color: #1f497d; font-family: 'Times New Roman', serif; font-size: 12pt;"><o:p></o:p></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com2tag:blogger.com,1999:blog-2709654881835485353.post-27871649036568250522015-10-19T12:16:00.002+01:002015-10-19T12:16:23.594+01:00Why a Young People’s Week?<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><i>19-25 October is our Young People's Week! But why are we focusing on young people with cystic fibrosis? Jacqueline Ali, Head of Information & Support at the Trust, explains all!</i></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">We’re
dedicating this week on our social media to all things to do with
young people. This marks the start of a new programme of work the Cystic
Fibrosis Trust is doing to engage with young people affected by cystic fibrosis
and work together to empower and enable young people to live their lives
unlimited by their condition.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">We
haven’t done a lot of work directly targeted at young people, and limitations
posed by cross-infection can make it tricky to seek views using traditional
methods such as focus groups. But that’s no excuse – there are lots of ways
we’re hoping we’ll be able to engage with young people over the coming weeks,
months and years – including making full use of digital technology to help us
better communicate and make sure our work is fully informed by what you want.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">We’ll
be recruiting young people to advise us on our work as part of a new advisory
group, so that we can make sure that what we’re doing is relevant and meeting
people’s needs. Look out for details of this during the week. We’re also
seeking young people with CF from all walks of life to be young ambassadors –
so if you have a positive story to share about CF, whether it’s overcoming
challenges, achieving your ambitions or excelling in education, or you would
just like to share your story to encourage and motivate others, then we’d love
to hear from you. Again, keep your eyes peeled for more on this during the
week.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">We’re
also excited about this Wednesday when we’ll be handing over control of our
social media to two young CF stars you may well be familiar with, so
stay tuned…<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<br />
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">Ultimately
this week is all about finding out about the things that really matter to you
and hopefully encouraging some discussion and lively debate. So do check in on
our Facebook and Twitter pages this week and find out what’s happening, share
with your friends and get involved in the discussions!</span><span style="font-family: Arial, sans-serif; font-size: 10pt;"><o:p></o:p></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com2tag:blogger.com,1999:blog-2709654881835485353.post-56440003060998583092015-10-14T17:27:00.001+01:002015-10-14T17:31:35.537+01:00Controlling Inflammation: A view from NACFC<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>On the last day of the North American CF Conference this weekend, Dr Janet Allen, Director of Strategic Innovation at the Trust, attended a session focused on 'Anti-inflammatories in CF: Pathways to Therapeutics’. This session set the scene for a wider debate around the outcomes of the Cystic Fibrosis Foundation’s working group on the topic. In her blog on the session, you can find out more about the human body’s immune response to inflammation and what this means for people with cystic fibrosis.</i></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The question is: how do we control and fine tune our body’s inflammation response to infection? </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Following an infection in the lungs, the body’s defence inflammation system responds to fight the invading bugs. The immune defence system is complex, but the primary cells recruited to start the fight are a type of white blood cell called neutrophils. These cells are not normally found in the lung, but following the detection of infection vast numbers move into the lungs from the blood and start to fight the harmful bacteria. Neutrophils are professionals and usually have all the tools they need to eat/kill the bacteria. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">If they succeed, these cells do their job and then die in a very controlled way. Or, if they sense that they are losing the battle against the infection, they send out signals saying ‘We need help’. More neutrophils and other cells of the immune system are recruited, leading to further inflammation. In people with CF, it is thought that this signalling for help carries on longer than it should (the “off switch” does not function properly) and, as a result, there is more inflammation than is necessary. This additional information is thought to damage the lungs. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">So, we need neutrophils to fight the infection but their very activation can lead to lung damage. There are ways of turning neutrophils ’on’ to do this job, but equally important there are signals that turn the neutrophils ‘off’. Most anti-inflammatory drugs stop the ‘on’ signals, as until recently we have understood less well the ‘off’ signals.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The dilemma is how to control the neutrophils to attack the infection and then stop without sending out ’help’ signals. This is a fine balancing act. In addition, the clinical trials to assess effectiveness will be quite long unless more sensitive measures of lung function are developed, which would enable the use of shorter trials with fewer participants than is possible using current techniques. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">So, the symposium addressed some of these key questions: </span><br />
<br />
<ul>
<li><span style="font-family: Verdana, sans-serif;">What are the best targets/drugs to test in CF inflammation?</span></li>
<li><span style="font-family: Verdana, sans-serif;">How can we be sure we will not stop the neutrophils from fighting the infection?</span></li>
<li><span style="font-family: Verdana, sans-serif;">What can we learn from previous studies?</span></li>
<li><span style="font-family: Verdana, sans-serif;">How can we design clinical trials to shorten their duration and still get a clear result? </span><span style="font-family: Verdana, sans-serif;"> </span></li>
</ul>
<br />
<span style="font-family: Verdana, sans-serif;">The session was well attended by CF clinicians and researchers from around the world and helped stimulate discussion and focus attention on this important challenge ahead of publication of the CFF working group’s guidance. This work will inform future research and therapeutic development globally and help to ensure it is done in a way that is safe and brings maximum benefit to people with CF. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><i>Dr Janet Allen is a member of the CFF working group which brings together leading experts in CF inflammation from around the world</i></span><br />
<div>
<br /></div>
</div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com2tag:blogger.com,1999:blog-2709654881835485353.post-68168105585999317712015-10-12T10:03:00.002+01:002015-10-12T10:03:26.781+01:00Praising Arizona - Looking back at NACFC 2015<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>The past four days saw Ed Owen, Trust Chief Executive, lead our delegation to the North American CF Conference in Phoenix, Arizona. Here he gives us the highlights from the largest global gathering in the fight against cystic fibrosis.</i><br /><br />As the 4,000 clinicians, health professionals, scientists,
company reps, families and charities like ourselves pack up and head homeward
across the globe, it’s worth reflecting what <a href="https://www.nacfconference.org/" target="_blank">the 29th annual North American CF Conference</a> has told us about the state of play in our international
effort to beat cystic fibrosis.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Zx_-IkeBAgs4rcKT84VqZBn8v-YDgHcmXFID-wckk_eoSvILDC3COAzl3a27DQ2imEfCTju6uPGlXnD2a4O9WtOoWXbaKf70pdxI8NJHxh0pxVuUCLkp7YmO83YYm_8DQInv0Kuy3S9p/s1600/CQ5XVVBU8AAt-Fd.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1Zx_-IkeBAgs4rcKT84VqZBn8v-YDgHcmXFID-wckk_eoSvILDC3COAzl3a27DQ2imEfCTju6uPGlXnD2a4O9WtOoWXbaKf70pdxI8NJHxh0pxVuUCLkp7YmO83YYm_8DQInv0Kuy3S9p/s400/CQ5XVVBU8AAt-Fd.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rebecca Cosgriff, Registry Lead, presenting at NACFC</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The collective determination and purpose remains very strong
and was evident throughout the four days of meetings, workshops, speeches and
discussions. If anything, the sheer excitement and wonder generated by the
scientific breakthroughs of just a few years ago has given way to a cool
confidence at what can be achieved across a range of fronts.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">This is matched, of course, with a realistic view that there
is a long way still to travel before our job is done. But distant hope has
genuinely shifted to steely belief and this conference showed how we, as an
international cystic fibrosis community, are transforming the character and face
of this condition.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">A good illustration of this is to witness the attendance of
the multitude of pharmaceutical and biotech companies here in Phoenix. Barely a
decade ago, much of industry would have avoided investing in a ‘rare disease’
like cystic fibrosis. Today, you can’t move for industry talking about their
development of new therapies, devices and diagnostic tools targeted at those
with the condition.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">All this is good news but not without its challenges. For
example, Vertex <a href="http://investors.vrtx.com/releasedetail.cfm?ReleaseID=935806">announced
this week</a> further news on its pipeline of precision medicines with planned
trials of new compounds to develop ‘triple therapies’ aimed at correcting the
genetic defect of those with one or two copies of the F508delta mutation.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">But, of course, we in the UK are soon to confront the more
immediate challenge of ensuring Orkambi – a mere double therapy of ivacaftor
and lumacaftor – is made available to those who can benefit.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">A key figure in the development of the pipeline of
gene-modifying therapies now coming through has been the Cystic Fibrosis
Foundation (CFF)’s long-time President, Bob Beall. After 35 years in his post,
he has made way for his deputy, Preston Campbell, and this conference was the
opportunity for the cystic fibrosis community across the US and worldwide to
mark his extraordinary legacy.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">It was great to see him, and <a href="https://twitter.com/Ed_Owen/status/652481591411773440" target="_blank">I was delighted to present himwith a bottle of fine Scottish whisky to demonstrate the thanks of the UK CF communityfor his work</a>. With the Foundation’s therapeutic development programme,
Bob has made a massive contribution to the changes we are seeing today.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">But, as I said, our work is very far from done, and while we
were here we sat down with Preston and his senior team to discuss a range of
collaborations with the Foundation, including the prospect of longer-term
innovation to develop a fundamental cure for cystic fibrosis using stem cell
and gene editing techniques.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">And alongside this transformational activity there is the
needs of people with cystic fibrosis community today, and it was refreshing to
hear Preston commit the CFF to a programme of activities to better engage those
with the condition, to hear the diversity of views and experience of the people
we are here for.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">As I said in my speech to the UK CF conference in Manchester
last month, cystic fibrosis for those living with it is not primarily a
clinical or scientific issue, it’s a life issue – and we need to understand
that in everything we do to help remove the barriers that prevent people with
CF living the life they want.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Fighting for a life unlimited by cystic fibrosis, today and
tomorrow, is what we are about, and I am pleased to report from the desert
landscape of Arizona that this fight is alive, strong and growing.</span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com1tag:blogger.com,1999:blog-2709654881835485353.post-23169839107274885592015-08-24T12:51:00.001+01:002015-08-24T12:51:34.939+01:00Volunteering at the Cystic Fibrosis Trust<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><i>As part of the Trust's commitment to volunteering, we've had the pleasure of welcoming two interns from the US to our office this Summer as part of a Study Abroad in London opportunity. To give a taste of what volunteering with us here in Aldgate, Leslie Drennan, one of these interns, gives an insight into her experience.</i><br /><br />Spending a summer working
in a city four thousand miles from everything I was familiar with was both
intimidating and exciting at the start, but any fear I had was soon quelled by
the brilliant and friendly staff at the Cystic Fibrosis Trust. Coming in, I
knew I would be working with the Information and Support team, but wasn’t quite
sure what that would entail. <o:p></o:p></span></span></div>
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<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">As soon as I arrived, I
was welcomed by my supervisor, James Atkins, and spent the next few days
getting to know my way around the office and the other people I would be
working with for the next seven weeks. The Information and Support team puts
together packets of information about cystic fibrosis (CF) for schools,
children and parents, as well as monitoring calls coming into the helpline so they
can give appropriate advice to those who call in. I was eager to help in any
way possible, so they immediately involved me in every project they were
working on. I did everything from researching methods to better serve the CF
community to helping fill out travel insurance forms. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Along the way, I learned
a great deal about CF and how it impacts not only those who have it, but every
person that comes into contact with it. The effects are not felt equally by every
person, as there are almost two thousand forms of the condition. Life can be
quite difficult for those dealing with lung or pancreatic issues. However, I
think the most essential thing I learned was that a person’s attitude towards CF
makes all the difference, both psychologically and physically. I was given an
entirely new perspective on my own health because of how much I take for
granted on a daily basis.<o:p></o:p></span></span></div>
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<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;"><br /></span></span></div>
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<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Jacqueline Ali, Head of Information
and Support, set up two CF clinic visits for me after learning about my
interest in becoming a psychologist. This rounded out my experience at the
Trust as I got to see first-hand at how clinicians and patients must work
closely with one another in order to best combat CF. Every person I worked with
went out of their way to make me feel welcome and useful.<o:p></o:p></span></span></div>
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<br />
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<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">Overall, my experience at
the Trust is one that I will always remember. Whether learning about best
practice in the workplace or how to integrate myself into another culture, I’ve
gained an immense amount from my placement. In fact, I’ve enjoyed my role in this
charity so much that I am now considering going into non-profit work once I
graduate from university. I feel very fortunate to have had the opportunity to
work for and with such driven, intelligent and pleasant people. My time at the Cystic
Fibrosis Trust has easily been the best part of coming to London.<br /><br /><i>Want to give some of your time to the fight against cystic fibrosis? Find out more about volunteering with us at </i></span></span><span style="font-family: Verdana, sans-serif;"><span style="line-height: 17.1200008392334px;"><a href="http://cysticfibrosis.org.uk/volunteer"><i>cysticfibrosis.org.uk/volunteer</i></a></span></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com0tag:blogger.com,1999:blog-2709654881835485353.post-24056017690302053872015-08-11T14:16:00.001+01:002015-08-11T14:25:35.745+01:00Charlotte's Story - Facing Up to the Challenge of Adult Disability Benefit <br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;"></span></b> <span style="font-family: Arial;"><em>Personal Independence Payment (PIP) is the new adult
disability benefit, replacing Disability Living Allowance (DLA) for people aged
16 to 64 with disabilities or long-term health conditions.<o:p></o:p></em></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;"><em>Change can be a good thing but there’s always a risk of it
going wrong – sometimes very wrong.<o:p></o:p></em></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;"><em>It’s a case of the latter that has motivated our Policy Manager Nick Medhurst to write this blog post.
</em></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">I’ll lay out my stall: I think PIP will work for some people
with cystic fibrosis. It’s made up of two parts – one part provides financial
support to help you with daily activities, and the other provides financial
support with ‘mobility’ issues. So, in a sense, that is two potential support
packages for ‘doing stuff’ and ‘getting around’.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">I believe that if the letter of the law is applied, the
majority of people with cystic fibrosis will get the support they deserve to
help them with their daily activities.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">I also believe that despite the myriad challenges that
people with cystic fibrosis face in getting around – from breathlessness,
fatigue, coughing fits and pain, to fear of infection and anxiety – that many
people who desperately need that support won’t have any chance to get the
support they deserve, because of another pathetic piece of miserly, ill-judged
policy making.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">So, theoretically, if you don’t need support to get around
but some financial help to overcome daily barriers to leading a normal life
will go a long way, then PIP will work for you.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">However, theory is only theory. Many months ago, I was contacted
by a mother in distress. Her daughter, Charlotte, was unwell and struggling.
She was turning 16 and was told she must apply for PIP, as she was no longer
eligible for children’s DLA or adult DLA given the change to PIP.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">This dedicated, caring, loving mother was caught up in a
bureaucratic nightmare of bad information, blind-alleys and complex processes.
She and her daughter embarked on the PIP application without any support or
quality advice and information. The government’s top-down, blunderbuss approach
and insistence on farming out stages of the process to private companies meant
that Charlotte and her mother had a million and one different points of contact
but nobody could give them straight answers and they continued to forge ahead
in the dark, as part of an experimental system.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">Charlotte’s mother rang me. I did what I could to explain
the theory of how the system should work and to help her make sense of the
jumble of loose ends that was, laughably, referred to as an application
‘pathway’. We discussed options, plans-of-action, tips and strategies.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">But I couldn’t help Charlotte how I would have wanted to. In
the end, the system failed her. And then kicked her whilst she was down.<o:p></o:p></span></div>
<br />
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<span style="font-family: Arial;">Charlotte, unwell and upset, was made to beg for the meagre
support she had been denied – for both parts of the benefit – in front of a
judge, at a tribunal.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">She was denied again.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">The complexities and bureaucracy of the system they entered
is enough to numb the mind and becalm the drive and ambition of even the most
resourceful. To subject Charlotte and her mother to such miserable and
intimidating treatment, at such a difficult time, is heartless enough to be
labelled cruel. What on earth did the endless stream of nameless officials
think they were achieving?<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">It is my view that the individuals involved should feel
ashamed as professionals and annoyed as taxpayers. What an utter waste of
everyone’s time, money and energies.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">Not everyone with cystic fibrosis will need welfare support
but the reality is that most do and for the vast majority it genuinely is a
lifeline, in the sense that it breaks down some of those financial and
logistical barriers and facilitates people going out and living their lives and
achieving their ambitions.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">The Cystic Fibrosis Trust is utterly committed to ensuring
that people with cystic fibrosis get the support they deserve on time, at the
right time, first time. That should appeal to everyone, from the government, to
the families and individuals that we exist for.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">We are working directly with an equally committed group of
specialist cystic fibrosis social workers from across the UK to help shape and
design our work and ensure that our advice and action is as impactful and
effective as possible.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">Our Support Services team provide a helpline to share advice and
information on a wide-range of welfare topics and handle many other issues and
questions besides.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">Our Policy and Public Affairs teams work to understand these
challenges thoroughly and ensure that those who can make a difference, like
politicians, know what a positive change is.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">Our Media team will continue to speak out on behalf of
everyone with cystic fibrosis to help everyone understand this complex and
cruel condition.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">Charlotte is heading to university this September. She will
be realising a life-long ambition and embracing one of life’s best
opportunities – to learn and excel and better herself.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">What an abject shame that the government has missed the
opportunity to support Charlotte to defy those challenges and meet the
obstacles that cystic fibrosis throws her way head on. She’ll do it on her own,
with the support of her loving family.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<span style="font-family: Arial;">I wouldn’t call that the Big Society. Far from it. That’s
our community and we’ll fight to the last.<o:p></o:p></span></div>
<br />
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<b style="mso-bidi-font-weight: normal;"><o:p><span style="font-family: Arial;"></span></o:p></b> </div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">If you want more
information about cystic fibrosis and Personal Independence Payment (PIP),
please read our <a href="http://www.cysticfibrosis.org.uk/about-cf/living-with-cystic-fibrosis/personal-independence-payments-(pip)" target="_blank">guidance</a>.<o:p></o:p></span></b></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: Arial;">Have you applied for
PIP? Tell us about your experience by emailing </span></b><a href="mailto:campaigns@cysticfibrosis.org.uk"><b style="mso-bidi-font-weight: normal;"><span style="color: #0563c1; font-family: Arial;">campaigns@cysticfibrosis.org.uk</span></b></a><b style="mso-bidi-font-weight: normal;"><o:p></o:p></b></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<b style="mso-bidi-font-weight: normal;"><o:p><span style="font-family: Arial;"> </span></o:p></b></div>
<br />
<div class="MsoNormal" style="margin: 0cm 0cm 8pt;">
<b style="mso-bidi-font-weight: normal;"><o:p><span style="font-family: Arial;"> </span></o:p></b></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com4tag:blogger.com,1999:blog-2709654881835485353.post-72298920848489559852015-08-05T17:12:00.000+01:002015-08-05T17:12:49.570+01:00'One Born Every Minute' - CF and Pregnancy<div class="MsoNoSpacing">
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;"><i><a href="http://www.channel4.com/programmes/one-born-every-minute">Channel 4's 'One Born Every Minute' </a>tonight (9pm) features Rhiannon Dunn, a mother with CF having her third child. As people with CF live longer, having a family becomes more of a possibility, but it doesn't take away from the challenges that CF brings on top of parenting a child, let alone three!<br /><br />Rhiannon tells us in her own words how she manages the balance of CF and parenthood.</i></span></span><br />
<span style="font-family: Verdana, sans-serif;"><i><br /></i></span><span lang="EN-US"><span style="font-family: Verdana, sans-serif;"><i></i></span></span>
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<span lang="EN-US"><span style="font-family: Verdana, sans-serif;"><i><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizc2t0zC0LiLKIktU2XNZlPgL2z4Sl_3VK1fPVJ86kfe0qPBhCKguUA9UQoA039pilvF-FTQ4M6aDsB1_04RGGzVQGMaM2r272UUNR1nIf4yEPTazNr5ylGU1InYzIkZNGxw7Xnlae3WKQ/s1600/RD.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizc2t0zC0LiLKIktU2XNZlPgL2z4Sl_3VK1fPVJ86kfe0qPBhCKguUA9UQoA039pilvF-FTQ4M6aDsB1_04RGGzVQGMaM2r272UUNR1nIf4yEPTazNr5ylGU1InYzIkZNGxw7Xnlae3WKQ/s320/RD.jpg" width="320" /></a></i></span></span></div>
<span lang="EN-US"><span style="font-family: Verdana, sans-serif;"><br /><br />The hours, days and weeks simply bleed into one another
since becoming a mother to three beautiful, strong-willed and noisy children,
but that's what I always dreamed of so I couldn't possibly complain… well maybe
once in a while, when I realise I'm drowning but not from my cystic fibrosis!<o:p></o:p></span></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-US"><span style="font-family: Verdana, sans-serif;">I was born in 1988 and was diagnosed with cystic fibrosis
(double DF508) through a sweat test at eight months’ old due to “failure to
thrive”. It was good to get the diagnosis as my mum couldn't take being called
an over-protective mother by doctors and now I have learned myself that a
mother’s intuition is real.<o:p></o:p></span></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">As
a child I had both hospital admission and home IV therapy and I always had
access to good nutrition even though I struggled gaining weight. Then I hit my
teens, at 15 I met my husband and we have been childhood sweethearts ever
since. We have been together 11 years this year and I'm lucky to have him as he
is supportive and there right by my side through CF and the journey that is motherhood.<o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">Being
a mother to three young children (and don't forget the three cats!) and having
cystic fibrosis along with diabetes is tough; I won't lie or sugar coat
anything. The overwhelming loving motherly instinct I always feel is always
tainted by guilt of deciding to bring a child into a world where I know I may
not be here to help see and nuture them right through, due to the life
expectancy of a CF patient, but then I have never been one to let CF get in the
way.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">I
have always been bold, confident and wanting to prove people wrong, so we took
the marriage and parenthood route & never looked back.<o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">Our
daily routines are more time consuming, demanding and nonstop, more than ever
on top of my medical needs, and it takes good, sound management to juggle
everything so it's home IVs through a portacath. Online groceries delivered to
our front door and plenty of take away dinners have become the norm as
something has to give, right? <o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">Our
home? How do I keep that clean? I don't: I had to admit defeat and bring in
extra help and hire a cleaner otherwise I would be 10 feet under! I'm on the go
16 hours a day, juggling CF and three young children, the novelty of school
runs has well and truly worn off, I can tell you that for a fact. <o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">Believe
when I say babies are easy but school-age children and driving across the city
for extra-curricular activities, play dates and not to mention their own
appointments when you have a child with their own disability, are things I
didn't plan for. But I'm thankful all the same, I have the opportunity and
privilege to have this life; I'm a very luck lady indeed.<o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">We
decided to agree to be filmed for Channel 4’s ‘One Born Every Minute’ series seven
to raise awareness of CF, empower and offer reassurance to women who have the
same genetic illness as me and to get that out to the public, so to do that,
what better way to get people’s attention than to get naked on TV!<o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">So I
hope you all enjoy watching me losing my dignity on national TV because I know
we had a fantastic experience recording it and would do it all over again. <o:p></o:p></span></div>
<div class="Body">
<br /></div>
<div class="Body">
<span style="font-family: Verdana, sans-serif;">Ps
not really - my husband’s booked in for a vasectomy for two weeks’ time, ha! Three
babies is more than enough!<br /><br /><a href="http://cysticfibrosis.org.uk/fertility"><i>Learn more about issues around cystic fibrosis and pregnancy, including fertility</i>.</a></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com8tag:blogger.com,1999:blog-2709654881835485353.post-19043720284942433862015-07-24T11:05:00.001+01:002015-07-24T11:05:49.555+01:00Welcome to Hack It Up!<i><span style="font-family: Verdana, sans-serif;">Yesterday, we launched Hack It Up!, our new online colloboration and innovation platform designed to bring the CF community together so we can all work on the challenges cystic fibrosis brings.<br /><br />Today our Community Manager, Emma Lake, who will be acting as the facilitator on Hack It Up! introduces herself and the platform</span></i><br />
<span style="font-family: Verdana, sans-serif;"><br />
</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYM6t7UUeN9F6smpcx5RUZ1PQiHMayCIbt8FHBo1RCZAD3bN_3xH4x4VREEFUDPAfJcpum_puVvp10Z6mfreerc0QStb8-IlK7JUZM65x0GOAzitR6NddcbEqfwa6Q8pOKvuEr-yJ37-8Z/s1600/Emma+Lake0042.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYM6t7UUeN9F6smpcx5RUZ1PQiHMayCIbt8FHBo1RCZAD3bN_3xH4x4VREEFUDPAfJcpum_puVvp10Z6mfreerc0QStb8-IlK7JUZM65x0GOAzitR6NddcbEqfwa6Q8pOKvuEr-yJ37-8Z/s320/Emma+Lake0042.jpg" width="212" /></span></a></div>
<span style="font-family: Verdana, sans-serif;">Hi, I’m Emma, the
facilitator at <a href="http://www.hackitup.org/">Hack It Up!</a> I have cystic fibrosis and I believe passionately
that everyone with the condition and those who help and support us, both at
home and in hospital, should help shape the future, through the
discussions and decisions that affect our lives.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
Our insight
and experience is uniquely valuable, we are the ones who are truly experts in
living with cystic fibrosis and we need to drive change, delivering impact
based on our needs and in our interests.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;">That’s why I’m
thrilled to be a part of <a href="http://www.hackitup.org/">Hack it Up, an innovative platform to make our voices heard on the issues that matter.</a><o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
I am really
excited about the first two challenges we have to discuss, and can’t wait to
start exploring ideas and sharing our collective expertise.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
In the first
challenge, we want to find out the tricks and techniques people have developed
to manage their CF while still living the life they want to lead.<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
Together with
people with CF, healthcare professionals and industry, <a href="http://cysticfibrosis.org.uk/smartcarecf">the Cystic FibrosisTrust is developing a project called SmartCareCF,</a> to find better, smarter ways
of managing care. Before we look ahead though, we need to look at what’s
happening right now. What works for you? How do you use technology to keep one
step ahead?-<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
At the
same time, we are exploring how being active can help keep lungs healthy for
longer. In our second challenge we want to know what activity means to you.
What do you do to try and stay healthy? How does it make you feel?<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
So, get
stuck in!<a href="http://www.hackitup.org/"> Join us in Hack it Up and give us your views and share your experience– there’s a whole community waiting to listen, to learn and to connect.</a><o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
Once you’ve
joined, please invite other people you know who understand life with cystic
fibrosis, such as parents, partners, friends, employers and colleagues. I’ve
already invited my mum, my husband and my best friend!<o:p></o:p></span><br />
<span style="font-family: Verdana, sans-serif;"><br />
</span><br />
<span style="font-family: Verdana, sans-serif;">Together, we
can change the world of cystic fibrosis and shape a better tomorrow. We
just have to get stuck in!<br /><br /><i><a href="http://cysticfibrosis.org.uk/smartcarecf">This is an edited version of a blog post from Hack It Up!</a> Join the conversation at <a href="http://www.hackitup.org/">www.hackitup.org</a></i></span><span style="font-family: Arial, sans-serif; font-size: 10pt;"><o:p></o:p></span>Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com0tag:blogger.com,1999:blog-2709654881835485353.post-45894601340627445422015-07-21T17:43:00.001+01:002015-07-21T17:44:37.831+01:00The Drop in Donors: What the organ donation statistics tell us<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;"><i><a href="http://www.nhsbt.nhs.uk/news-and-media/news-articles/news_2015_07_20.asp">Yesterday NHSBT published figures revealing the first overall drop in organ donation in the UK for more than a decade.</a> Public Affairs Manager Darren O’ Keefe talks about what
these figures tell us about soft opt-out, public attitudes and the need to talk
to your family and friends about your wishes</i>.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRavpf5NBJDJY_V_PMw5ZBneR05gkFaC_9M7kmYwC-Wm6CJC-_oJIo3llutQcPdEzGf16m29OKwnvfI6tSez-T1SSLRZEzA67ODPb9g-rYwTa4tw0fIQEMyaGXBu8LfOiKIFuWEe5WmL4A/s1600/DIGI26-A+Spell+it+out+campaign+imagev2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRavpf5NBJDJY_V_PMw5ZBneR05gkFaC_9M7kmYwC-Wm6CJC-_oJIo3llutQcPdEzGf16m29OKwnvfI6tSez-T1SSLRZEzA67ODPb9g-rYwTa4tw0fIQEMyaGXBu8LfOiKIFuWEe5WmL4A/s200/DIGI26-A+Spell+it+out+campaign+imagev2.jpg" width="200" /></a></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">New
statistics released by NHS Blood and Transplant yesterday for 2014/15 show a 5%
decrease on organ donation across the UK since 2013/14. This is the first
decrease in 11 years, showing there is no room for complacency when it comes to
ensuring as many people as possible receive this amazing gift of life. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">Interestingly,
the only nation that has not shown a decrease in donations is Wales, where the
move to soft opt-out for organ donation in December this year has been preceded
by years of high-profile debate about organ donation. The lesson here is that
we must keep people talking about organ donation and sharing their wishes to
donate with their families. Especially given that figures show family consent rates
are below 60% and families are much more likely to agree to donation going
ahead if they know it is what their loved one wanted. <o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">The
subject of soft opt-out stimulates conversation and it’s a policy we support.
We are encouraged to see Wales take the lead on it and Northern Ireland and
Scotland exploring legislation on the issue. However, it is not acceptable to
"wait and see" what happens in Wales; this will take years – years
that the many people with cystic fibrosis and other conditions across the UK
waiting for a donor just don't have. This is why we will continue to support
the soft opt-out legislation in Northern Ireland and Scotland, as well as
urging England to explore the issue as well.<o:p></o:p></span></div>
<div class="MsoNoSpacing">
<br /></div>
<br />
<div class="MsoNoSpacing">
<span style="font-family: Verdana, sans-serif;">The
Cystic Fibrosis Trust is working tirelessly to ensure that people with cystic
fibrosis are able to receive the lung transplant they may come to depend on. We
have made a great deal of progress through the <a href="http://cysticfibrosis.org.uk/who-we-are/campaigning-hard/hope-for-more">‘Hope for More’ campaign</a> to ensure the most is
made of the donated lungs that are already available. This work risks being
undermined if donation rates fall, so please <a href="https://www.organdonation.nhs.uk/register-to-donate/register-your-details/">sign up to the organ
donation register</a>
if you haven’t already, make sure you share your decision, and encourage others
to the do the same.<br /><br /><i>Organ donation features in tonight's <a href="http://www.bbc.co.uk/programmes/b063hpbj">BBC Two documentary on Great Ormond Street</a>. Focusing on children who need double lung-transplants, tonight's epidsode those with cystic fibrosis. Watch it live on BBC Two, 9pm or catch up on BBCiPlayer</i></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com2tag:blogger.com,1999:blog-2709654881835485353.post-23227052402875578322015-07-10T14:24:00.001+01:002015-07-10T14:24:45.663+01:00What the DLA ruling means for CF<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>Policy Manager Nick Medhurst takes us through Wednesday's landmark ruling on DLA and why it matters for people with cystic fibrosis.</i><br /><br />On Wednesday the <a href="http://www.bbc.co.uk/news/uk-england-33442942">Supreme Court ruled that the government’s decision to stop Cameron Mathieson’s Disability Living Allowance (DLA) payments, as he lay in the hospital where he would eventually pass away, was unlawful</a>,
with judges labelling it “grossly
unfair”.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The government had argued that they were “paying twice” for
Cameron’s care.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Cameron had cystic fibrosis, Duchenne muscular dystrophy and
other long-term health issues, and passed away in 2012 at the age of five,
having spent over two years in hospital.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Cameron’s family continued to fight an injustice that hit
them in their darkest hours, on behalf of everyone who has and will face the
same situation.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">The case revolves around a government directive, which
demands that an individual’s benefits are stopped after they spend over 12
consecutive weeks in hospital. This is apparently “to prevent double provision”
– in other words, the government don’t believe they should have to support a
family financially, if they are already picking up the medical bill in
hospital.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">This fundamental misunderstanding – that an individual’s or
a family’s need for financial support vanishes as soon as you step on to hospital
grounds – is obviously wrong, something <a href="http://www.cafamily.org.uk/media/724112/dla_takeaway_2013_final.pdf">supported
by research</a>, conducted by Contact a Family and The Children’s Trust with
families who found themselves in the same circumstances:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<ul style="margin-top: 0cm;" type="disc">
<li class="MsoNormal"><span style="font-family: Verdana, sans-serif;">99% said
they provide more or the same level of care when their child is in
hospital compared to when at home.<o:p></o:p></span></li>
<li class="MsoNormal"><span style="font-family: Verdana, sans-serif;">93% said
that their costs relating to their child's disability increase when their
child is in hospital.<o:p></o:p></span></li>
</ul>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Increased travel, accommodation and food costs are simple
examples but the reality is more complex and many families will find themselves
significantly harder-up in such periods.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">So Wednesday’s ruling is a very important victory in the
fight to recognise the true costs of living with a long-term health condition
or caring for someone with one.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Cameron’s father, Craig, told the BBC that the ruling “is a
fantastic legacy for Cameron.” And its ramifications could be hugely
significant for us as a community.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Cameron Mathieson was very young and very unwell when he
passed away but his short life and his family’s courage to take forward the
fight in his honour, struck a blow for everyone living with a long-term health
condition who says that life is worth more than the cost of medical care.; We,
as a society, must work hard to remove barriers to leading a happy and
fulfilling life.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">So when we hear <a href="http://www.bbc.co.uk/news/uk-england-33442942">nameless DWP spokespeople</a>
telling us that:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt;">
<span style="font-family: Verdana, sans-serif;">"Up to now, DLA has been
suspended when a child is in receipt of long-term NHS inpatient care in order
to prevent double provision - the taxpayer paying twice for the same thing.
This has been the case for more than 20 years"<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: 36.0pt;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">– we can say they were wrong and that was 20 years too long, denying the basic support
that can go some way to meeting an individual’s or a family’s non-medical needs,
often when it was needed most. Their careless and miserly policy-making caused
unnecessary pain and hardship.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">For many people with cystic fibrosis – children and adults –
welfare support is a vital lifeline, enabling work, socialising, education,
exercise and physically getting to clinic. Cameron Mathieson’s legacy for the CF
community is a renewed strength and resolve to tell society that we can turn a
little basic support into much more and we can achieve great things.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;"><i>For information on benefits, <a href="http://cysticfibrosis.org.uk/who-we-are/support-for-all/helpline">contact
our helpline</a> on 0300 373 1000.</i></span><o:p></o:p></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com1tag:blogger.com,1999:blog-2709654881835485353.post-80728461354680718702015-07-04T16:29:00.000+01:002015-07-04T16:29:22.239+01:00Drawing breath<!--[if gte mso 9]><xml>
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<br />
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<i style="mso-bidi-font-style: normal;"><span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">The last few days have seen
some dramatic breaking news for the cystic fibrosis community, with results
from the gene therapy Phase 2b clinical trial being published, NHS England
announcing funding for ivacaftor for eight rare mutations, and the FDA in the US licensing the combination treatment Orkambi.
In this blog, Trust Chief Executive Ed Owen looks back on a momentous couple of days, and how the power
of the CF community shines through.</span></i></div>
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<br /></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">The last 48 hours
has proved a significant step forward in our fight for a life unlimited by
cystic fibrosis – and one that reinforces the collective power we have as a
community, both national and global.</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">On Friday morning
the results of the gene therapy Phase 2b clinical trial were published in the <a href="http://www.thelancet.com/pb/assets/raw/Lancet/pdfs/S2213260015002453.pdf"><span style="color: black; mso-themecolor: text1;">Lancet Respiratory journal</span></a>.
While not a surprise to those who took part in our <a href="http://cysticfibrosis.org.uk/gtcpresentation"><span style="color: black; mso-themecolor: text1;">sneak preview</span></a> a few weeks ago, the outcome is
certainly encouraging.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">More clinical
trials are needed before we can say gene therapy can be a viable treatment for
people with cystic fibrosis, but it successfully establishes proof of concept
that demonstrates genuine promise.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">Future trials are
now needed and that will almost certainly require the sort of resources and
expertise that only a pharmaceutical company can provide. We also have to
be realistic and accept that this will take some time.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">But it is good
news and one that has not come this far by accident.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">First and
foremost, it is a tremendous tribute to Professor Eric Alton and the wider Gene
Therapy Consortium team for their ground-breaking work. Yet, as they would
be the first to say, this could not have happened without the participation of
people with cystic fibrosis, young and old, who have volunteered to take part
in this and earlier clinical trials.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">And, vitally, it
has only come about because of the extraordinary support of the wider cystic
fibrosis community raising many millions of pounds over the last 15 years.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">This is continuing
and the Trust has <a href="http://www.cysticfibrosis.org.uk/news/gene-therapy-investment"><span style="color: black; mso-themecolor: text1;">pledged a further £500,000</span></a>
to support the GTC’s Wave 2 gene therapy product which – while about five years
behind the product that is the focus of this week’s news – has potentially much
greater impact.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">The Trust will
continue to work tirelessly to ensure everyone with cystic fibrosis gets access
to life-changing therapies however long it takes. As with gene therapy and
other promising scientific development, that means investing funds raised in
research. But it also means lobbying and campaigning to ensure the NHS
funds therapies approved by regulators.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">So we were
delighted with the news on Thursday that NHS England has <a href="http://www.cysticfibrosis.org.uk/news/kalydeco-nhs-expansion"><span style="color: black; mso-themecolor: text1;">agreed to extend access to Kalydeco</span></a>
(ivacaftor) to about 40 people who have non-G551D gating mutations of cystic
fibrosis.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">It has taken far
too long, and demonstrates the inadequate system in place to ensure such
transformational drugs are appraised. What’s more, a handful of people in
Wales are still waiting – and we will continue to fight for them until the
right decision is made.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">But the voice of
people with cystic fibrosis supported by clinical teams and backed by clear
evidence of Kalydeco’s transformational impact rightly won the day.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">There are many
more issues like this to come over the next years and a further big potential
campaigning issue on the horizon is Orkambi – the so-called combination therapy
eligible for those with two copies of the F508delta gene, the most common
mutation of cystic fibrosis.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">Orkambi has yet to
be approved by EU regulators but it was good to hear this week that the US
regulators, the FDA, have given the <a href="http://www.cysticfibrosis.org.uk/news/orkambi-fda-approval"><span style="color: black; mso-themecolor: text1;">green light for its use in America</span></a>.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">Its effect is less
dramatic than that seen with Kalydeco on those with gating mutations. But
the <a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1409547"><span style="color: black; mso-themecolor: text1;">evidence from Phase 3 trials</span></a>
shows that it significantly reduces hospitalisations for those who take the
drug and stabilises lung function.</span></div>
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<span style="color: black; font-family: "Calibri",sans-serif; font-size: 11.0pt; mso-fareast-language: EN-US; mso-themecolor: text1;">We are expecting a
decision from European regulators by the end of this year and, if approved, the
key issue will be whether it is reimbursed by the NHS. It is by no means
certain that it will, and we will be pushing Vertex and the NHS in the four
parts of the UK to do the right thing to enable Orkambi to get to those who
need it as soon as possible at an affordable price.</span></div>
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<span style="color: black; mso-ascii-font-family: Calibri; mso-hansi-font-family: Calibri; mso-themecolor: text1;">This week has shown that when we come
together as one we can change the world for many with cystic fibrosis. The
Power of Us will continue to be our key weapon to secure further changes vital
to our mission to transform the lives of all.</span><span style="color: black; font-family: "Verdana",sans-serif; mso-themecolor: text1;"></span></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com1tag:blogger.com,1999:blog-2709654881835485353.post-33685241249534871662015-06-19T08:14:00.000+01:002015-06-19T14:00:15.096+01:00Cystic Fibrosis Comes to EastEnders<i><span style="font-family: Verdana, sans-serif;">By now, you've either seen or heard that one of the latest storylines on <a href="http://www.bbc.co.uk/programmes/b006m86d" target="_blank">long-running BBC soap EastEnders</a> involves a young girl with cystic fibrosis.<br /><br />This is the culmination of months of work between the production team and the Cystic Fibrosis Trust to ensure that cystic fibrosis is represented as accurately as possible on-screen. Our own Engagement Director, Oli Lewington, has been one of the key people in these conversations and having already given <a href="http://www.bbc.co.uk/blogs/eastenders/entries/074217ef-01ae-4295-93f0-fec72dc7dbdb" target="_blank">some insight into how it all came together on EastEnders blog</a>, Oli expands on the work for us here too.</span></i><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Back in November I received a meeting request from our Communications Manager, Paul, to accompany him to a meeting at Elstree Studios. All I knew at the time was that it was the same studio where Eastenders was shot.</span><br />
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<span style="font-family: Verdana, sans-serif;">When we arrived I was hastily asked to sign a non-disclosure agreement forbidding me from discussing any of the contents of the meeting with anyone outside that room.</span><br />
<span style="font-family: Verdana, sans-serif;">Today, of course, you are all well aware of Jade, the new character introduced to Albert Square in Friday night’s “duff duff” moment.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Anyone in the CF community is also well-aware of the traditionally sketchy nature of representations of CF on TV, not another well-watched BBC show, Holby City. You’ll understand, then, our excitement to be involved at such an early stage, some eight months before the character first appeared on screen, helping to shape the direction Jade may travel and ensure decision-making about her health was as correct as possible.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">We always have to allow for a little dramatic licence and I like to think that some of those minor details that only we would notice aren’t as important as the fact we have a character on a major UK soap opera with cystic fibrosis. Sometimes you have to pick your battles!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Since that first meeting, the team have been sending through scripts for us to review. Clearly, I can’t go into too much detail about things not yet broadcast, but just one example of their willingness to listen to our perspective and adapt their story came up in Jade’s very first scene.</span><br />
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<span style="font-family: Verdana, sans-serif;">In the final moments of last Friday’s episode, she appears wearing what was originally scripted to be an oxygen mask, struggling for breath and making the impact all the greater on her grandmother, Shirley, who had already lost her son to CF (off-screen, some years ago).</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">In subsequent scripts, the activity they had Jade doing would clearly have been beyond someone who was so ill. She would also, obviously, have needed to tote her oxygen around with her everywhere she went.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">We called the writers and explained that by having her in an oxygen mask for that opening scene, they were committing themselves to one very strict direction that didn’t leave them with many options going forward.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">While not as immediately recognisable to a lay audience as an oxygen mask, we suggested that a nebuliser may be a better approach for that first entrance, which is exactly what viewers saw when they tuned in on Friday night.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">We’re so excited to finally have this kind of exposure for what we all know is – relatively speaking – quite a rare disease. And we’re even more pleased that the BBC have shown such commitment to getting it right, and are willing to listen to our feedback to make Jade’s story as real as possible not just for our eagle-eyed community, but for the great British public who may be learning about CF for the first time.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I, for one, can’t wait to see Jade’s story unfold, and to finally be able to talk more about it as it does!</span>Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com1tag:blogger.com,1999:blog-2709654881835485353.post-80502525515138473472015-06-15T19:28:00.000+01:002015-06-15T19:28:26.602+01:00The Breathe With Me Strawfie Challenge<i><span style="font-family: Verdana, sans-serif;">We've got an amazing dedicated community out there, especially among those of you raising both awareness and funds through not just individual events but also your own great initiatives and campaign.<br /><br />A recent example of success these past few months has been the Breathe With Me single and Strawfie Challenge, so who better to ask for inspiration and the story behind it, then the team who made it happen.</span></i><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.breathewithme.info/" target="_blank">The Breathe With Me Strawfie Challenge</a> began with a simple idea – to write a song asking people to try experiencing the struggle to breathe that people with CF live with. The way they could experience this was by breathing through a straw while pinching their nose – an exercise that has been used for many years by CF campaigners.</span><br />
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<span style="font-family: Verdana, sans-serif;">Inspiration struck and <a href="https://www.youtube.com/watch?v=ZUhOwCNkAlU" target="_blank">‘Breathe With Me’ was recorded by annaJo</a>, a songstress from Crawley living with cystic fibrosis who insisted on a group name to recognise the joint effort behind the project. The song was billed as ‘Breathe With Me by TWF featuring annaJo’. TWF stands for ‘Together We Fight’. In December 2014 ‘Breathe With Me’ made the semi-finals of the UK Songwriting Contest in both ‘Music Video’ and ‘Lyrics’ categories.</span><br />
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<br />
<span style="font-family: Verdana, sans-serif;">Several months later, it occurred to the ‘Breathe With Me’ team we could use another modern phenomenon to help spread our message, by asking people to take a selfie doing the straw breathing exercise and develop a social media campaign with people nominating their friends to take part. The description ‘straw breathing selfie’ proved a bit of a mouthful and the Strawfie was born!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJODAPBJM-VLxmj78vwVENXrULvAPzzIRGqshhtjYQXJTPXUwFmtH7PwzVz1CCSku5R5p3VyPS9YijKHVpH2zxIuIRGYQ9N-3OjXRgvH3cK34dOGfAjII_EgNLvU7ohcnUW-auwXo4SkN3/s1600/Breathewithme_arc_text.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJODAPBJM-VLxmj78vwVENXrULvAPzzIRGqshhtjYQXJTPXUwFmtH7PwzVz1CCSku5R5p3VyPS9YijKHVpH2zxIuIRGYQ9N-3OjXRgvH3cK34dOGfAjII_EgNLvU7ohcnUW-auwXo4SkN3/s320/Breathewithme_arc_text.png" width="196" /></span></a></div>
<span style="font-family: Verdana, sans-serif;">The first big event we visited with the Strawfie concept was Butserfest, a music festival aimed at teenagers. <a href="http://www.dailymail.co.uk/tvshowbiz/article-3096594/Amanda-Holden-leaves-little-imagination-dramatic-plunging-gown-Alesha-Dixon-vamps-bondage-inspired-PVC-dress-BGT-live-semi-final.html" target="_blank">This resulted in a fantastic opportunity to have ‘Breathe With Me’ played from the main stage while festival-goers took Strawfies</a>.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />
<span style="font-family: Verdana, sans-serif;">Since then, the Strawfie Team has attended many events. The Great South Run was a particular highlight as we were featured in Channel 5’s coverage when Joyce Griffin, a mother of three children with CF, was interviewed at the starting line.</span><br />
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<br />
<a href="http://misshampshire.blogspot.co.uk/2015/06/beauty-queens-unite-at-brackenwood.html" target="_blank"><span style="font-family: Verdana, sans-serif;">Recently, we gained the support of Miss Hampshire, Larissa Hirst, and through her campaigning, several other Miss England contestants have posted their glamorous Strawfies.</span></a><br />
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<br />
<span style="font-family: Verdana, sans-serif;">So what’s next for the Strawfie Challenge? We would love the CF community to help us get our first big celebrity Strawfie. The CF community is spread far and wide, with many talented individuals in every field. We know some of you must know a celebrity, but who will be the first to ask that person to post a Strawfie?</span><br />
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<br />
<span style="font-family: Verdana, sans-serif;">Interest in the campaign is building all the time and the Cystic Fibrosis Trust has asked us to share our story as part of their #PowerOfUs campaign. We share their belief that working together and supporting each other is where the strength of the CF community lies.</span><br />
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<br />
<span style="font-family: Verdana, sans-serif;">Recently we have begun to receive Strawfies from as far afield as Australia and the USA. The big vision when we started this journey was to involve the worldwide CF community, because together we can shout louder about our cause.</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ8urnrZJFKgf3FsUcmehGH8LlJf5GV8TdKG11VfJtRVOEIVXcFsZJZZ6xzHhvFHiGzeNQA5Q5hXahIWBIiH4sLK4YIGAglTaF53xa7KACXbeCmao9uAnpsVdT7wcqnhFb8vC3T0AEAOks/s1600/Royal+Marines+small.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJ8urnrZJFKgf3FsUcmehGH8LlJf5GV8TdKG11VfJtRVOEIVXcFsZJZZ6xzHhvFHiGzeNQA5Q5hXahIWBIiH4sLK4YIGAglTaF53xa7KACXbeCmao9uAnpsVdT7wcqnhFb8vC3T0AEAOks/s320/Royal+Marines+small.jpg" width="238" /></span></a><br />
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<br />
<span style="font-family: Verdana, sans-serif;">Hopefully Strawfies will keep coming and we need you to keep working to create opportunities to incorporate Strawfies into ANY kind of event or organisation you have an involvement with, particularly non-CF events as the aim is to spread awareness.</span><br />
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<br />
<span style="font-family: Verdana, sans-serif;">Our heartfelt hope is this campaign will greatly raise the profile of CF among the general public, increasing awareness and fundraising efforts. We share the prayer of the entire cystic fibrosis community – that a cure will result from all of our joint efforts and people will never have to experience breathing in a restricted way. In the words of the song “Together we will find a way, I know we’ll win this fight…”</span>Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com0tag:blogger.com,1999:blog-2709654881835485353.post-80574636768737445652015-06-13T08:43:00.001+01:002015-06-13T08:43:10.637+01:00The Power of Us is Global - CF Week 2015<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitTSFwd4K5CheU3KuFU4IHXdJwMdSd14bPdDC2SzShcP5soXwOjN_eDRi4m1y6c1BSmAwrmYpX4cyeAkG4t0kjZiRB6I0UUCV-dWhhF-g9VSDWv3nk-13EEfwnZliY-RH2V8V7aBdKI2t7/s1600/ecfs.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitTSFwd4K5CheU3KuFU4IHXdJwMdSd14bPdDC2SzShcP5soXwOjN_eDRi4m1y6c1BSmAwrmYpX4cyeAkG4t0kjZiRB6I0UUCV-dWhhF-g9VSDWv3nk-13EEfwnZliY-RH2V8V7aBdKI2t7/s200/ecfs.png" width="200" /></a></div>
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<span style="font-family: Verdana, sans-serif;"><i>While we in the UK have been coming together for CF Week 2015 and sharing our stories through the Power Of Us, there has been another important coming together in the fight against cystic fibrosis as the <a href="https://www.ecfs.eu/brussels2015" target="_blank">38th European Cystic Fibrosis Society Conference</a> took place in Brussels, Belgium. <br /><br />Our Chief Executive Ed Owen, along with colleagues from our Research and Registry teams, attended and joined many from around the world, demonstrating the global effort in beating CF, and here are his highlights of both ECFS and CF Week 2015.</i><br /><br />To get to the old Town Hall for the welcoming ceremony of
this year’s European Cystic Fibrosis Society conference I had to weave through
the many tourists in the cobbled Grand Place in central Brussels. As I
approached the entrance, a smiling woman bounded up to me to say hello.</span></div>
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<span style="font-family: Verdana, sans-serif;"><o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">“Thank you so much for joining us,” she said. “It’s a
pleasure,” I replied politely and, assuming she was part of the welcoming
group, told her how delighted I was to be in Brussels with so many others
committed to the fight against cystic fibrosis.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">She looked at me quizzically and rather
disappointed. “I am very sorry,” she said, “I thought you were here to
join the Tintin tour.”<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Like Tintin, created by Herge, one of Brussels’ most famous
sons, we in the cystic fibrosis community are on a great adventure to beat a
cruel and common villain. Yet ours is not a work of fiction but a real
story of a thousands of people living with a condition that shortens life and
limits freedoms and opportunities.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">This week saw two different aspects of how that fight is
slowly being won.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Here in Brussels, the finest scientists, clinicians,
business people and advocates, came together from across the world to share
knowledge, ideas and plans. It is an awesome group working on a range of
research projects, trials, innovations and initiatives to beat cystic fibrosis
– from tackling new and old bugs to understanding the psychological impact of
the condition, to developing breakthrough physiotherapy techniques to
correcting the basic genetic defect.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;"><a href="http://investors.vrtx.com/releasedetail.cfm?ReleaseID=917543" target="_blank">There was a lot of discussion about Orkambi, Vertex’s newdrug currently being assess by regulators here in Europe and the US</a>. But there was
also a great deal of interest too in <a href="http://cysticfibrosis.org.uk/news/ecfs-lynovex" target="_blank">exciting new gene modifying therapiescoming through clinical trials from other companies like Novabiotics,</a> a biotech company that the Cystic Fibrosis Trust has been
working to support, and Galapagos.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">But this global research effort cannot beat cystic fibrosis
alone. It can only do so with the active support and engagement of the
wider cystic fibrosis community making its voice heard. It is the stories
and insight of those living with the condition and their carers, together with
the collective expression of all supporters, that is helping to change the
world of cystic fibrosis.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">That is what CF Week in the UK was all about over the last
few days, and we have heard some extraordinary insights, from <a href="http://www.mumsnet.com/Talk/guest_posts/2399530-Guest-post-My-baby-has-cystic-fibrosis-and-its-my-job-to-help-him-feel-normal" target="_blank">Hannah’s blog onMumsne</a>t to <a href="https://www.youtube.com/watch?v=p0dVWBKMUxw" target="_blank">Umar’s story on YouTube</a>. By speaking out, telling our
stories, we are helping to make a real difference and demonstrating the
extraordinary “Power of Us”.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">As Tintin found, the struggle to beat a determined foe is
rarely easy. But, like the intrepid boy reporter too, we in the cystic
fibrosis community – bringing together the finest scientific minds, dedicated
clinical teams and all those living with cystic fibrosis every day – will win
out in the end.</span><o:p></o:p></div>
Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com0tag:blogger.com,1999:blog-2709654881835485353.post-91881290038119164072015-06-10T13:46:00.001+01:002015-06-10T13:55:04.131+01:00'Hope For More': Transplants & The Power of Us - CF Week 2015<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><i>A common story shared by our community is that of transplantation. Still 1 in 3 people with cystic fibrosis on the transplant waiting list will die before they receive a lung transplant.<br /><br />Since last year, following the publication of our <a href="http://cysticfibrosis.org.uk/hopeformore" target="_blank">'Hope for More' report and subsequent campaign</a>, the Trust has continued to lobby for change and improvements to transplantation in cystic fibrosis. Public Affairs Manager Darren O'Keefe has been leading on much of this work and today updates us on some of the developments and progress made since last Spring</i>.</span><br />
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<span style="font-family: Verdana, sans-serif;">It is always humbling to meet the
people directly affected by the fight to improve transplant rates: people on
the waiting list, desperately waiting for the call that might just be the
difference between life and death; people who’ve been lucky enough to get the
call, and of course the families and friends who’ve been there every step of
the journey.<o:p></o:p></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB6BEjVV_GsVt4IORFhmBAPjgtkU-bEeD4kO1U42FieWm3v0vj85X9x5qNQ3rPiD6TxauI-ig85i98BE-AVitVWc6UMhDKzV-S7T5vvbmLsG0tVQejOP8MohtRvI-uD09ckkPEw6iVRSj3/s1600/CGfgbj4W8AEro5q.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB6BEjVV_GsVt4IORFhmBAPjgtkU-bEeD4kO1U42FieWm3v0vj85X9x5qNQ3rPiD6TxauI-ig85i98BE-AVitVWc6UMhDKzV-S7T5vvbmLsG0tVQejOP8MohtRvI-uD09ckkPEw6iVRSj3/s400/CGfgbj4W8AEro5q.jpg" width="300" /></a></div>
<span style="font-family: Verdana, sans-serif;">Last week I was in Scotland in a
room full of these incredibly brave people as Anne McTaggart MSP (pictured) followed
Northern Irish politician Jo-Anne Dobson and the Welsh parliament in introducing
legislation to make soft opt-out organ donation a reality.</span></div>
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<span style="font-family: Verdana, sans-serif;">With 70% of the national
population not registered as organ donors, this policy is a no-brainer. I hope
the whole country follows the example set in Wales without delay and will
continue to pressure Westminster.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">However, these things inevitably
take time and the Trust is doing everything we can to make sure that the organs
already available are put to the best possible use. A year ago, in our ’Hope
for More’ report, we exposed the tragedy that one in three people with cystic
fibrosis waiting for a lung transplant dies before they can receive one,
while 75% of donated lungs go unused. <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Our campaign resulted in the Government
admitting there was a huge problem and they have agreed to trial our proposed system
of national allocation for donated lungs. This system is based on need rather
than location and we believe it could greatly reduce these needless deaths. We
understand that such a radical change must be tested and eagerly await the
outcome of the trial. <o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">So for now we shift our focus to
other issues: <o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: Verdana, sans-serif;">·<span style="font-stretch: normal;"> </span>Why are so many donated lungs rejected by
surgeons and patients? Are the criteria for what makes these lungs acceptable
suitable? <o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: Verdana, sans-serif;">·<span style="font-stretch: normal;"> </span>Are people given enough information to make a
truly informed choice as to whether to accept a pair of lungs that while not
perfect, may be their only chance? <o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: Verdana, sans-serif;">·<span style="font-stretch: normal;"> </span>Do our hospitals and surgeons have all resources
and skills needed to make the very best of what they have?<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">We have a host of MPs supporting our fight to have these
questions answered. We will not let the government rest in campaigning for
improved facilities and will soon get some of the finest surgeons together to
explore the best transplant practices from around the world. We have partnered
with NHS Blood & Transplant to establish surgeon and patients attitudes to
risk. <o:p></o:p></span></div>
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<span style="line-height: 107%;"><span style="font-family: Verdana, sans-serif;">‘Hope for More’ was so effective because of the
stories shared by you, our community. We were able to show the real impact
these issues have on real people, each and every day. Ultimately we will fight
for as long as it takes because those brave people and their families deserve
hope for much more. So keep those stories coming. And we will win this fight
together.</span></span>Cystic Fibrosis Trusthttp://www.blogger.com/profile/15799442896085224627noreply@blogger.com0