They are available to sing at any event, please contact d.leigh@etoncollege.org.uk for more information.
Tuesday 15 December 2009
Want to book some great entertainment for your fundraising event?
They are available to sing at any event, please contact d.leigh@etoncollege.org.uk for more information.
Tuesday 1 December 2009
About our committees
Items discussed included work on CF clinical trials in the UK and in Europe, a review of the work of the UK CF Microbiology Consortium, swine flu and the CF Registry – a clinical database of people with CF in the UK.
A lot of the info discussed will make it into CF Today at some point so keep your eyes peeled.
Friday 20 November 2009
Christmas is coming!
Monday 2 November 2009
YOUNG SINGER SONGWRITERS TEAM UP TO SEE OFF CF
The project has been masterminded by manager and promoter Lee Robson from Rochdale, who wanted to do something for the charity after meeting one of its young ambassadors who has Cystic Fibrosis, Kelli Gallacher. Cystic Fibrosis (CF) is one of the UK’s most common, life-threatening inherited diseases and claims three lives a week in the UK.
Lee said “I decided I wanted to do a single and album to raise money for the charity and have managed to get unsigned artists and bands from all over the world to take part. All songs on the album have been written by the artists themselves or by writers they work with.”
Full details can be found at http://www.faithalbumlaunch.co.uk/
All money raised from the sale of the single and album will help fund research into treating and curing CF. It will also help provide support, advice and appropriate clinical care to the 8,000 babies, children and young adults with Cystic Fibrosis in the UK.
Tuesday 6 October 2009
Another person on the plinth!
Lois-Jane Thompson is going to be on the fourth plinth in Trafalgar Square this Friday at 8am to raise awareness and funds for the CF Trust. She is looking for volunteers to shake CF Trust collection boxes and buckets whilst she is on the plinth - if you are interested please find her in facebook and send her a message!
Thursday 1 October 2009
Big Bounce for the CF Trust
Wednesday 19 August 2009
Oxygen on flights
At present British Airways, Virgin, Emirates, Thomson and Cathay Pacific do not charge people for oxygen and Easyjet and Flybe allow people to bring their own oxygen on board. However many other airlines are still charging.
If you have had some experience with this please get in touch by emailing gfoy@cftrust.org.uk - we would love to hear your story.
Tuesday 4 August 2009
Get your running shoes on for the CF Trust
Closer to home, the Royal Parks Half Marathon, a relatively new event, offers you the chance to see London's parks at one of the most beautiful times of the year - autumn. The run takes in four Royal Parks and offers spectacular views of Buckingham Palace, the Houses of Parliament, the London Eye, Marble Arch and the Royal Albert Hall. This event is on Sunday 11 October.
Go to http://www.cftrust.org.uk/help/events/ for more info but be quick - we only have guaranteed charity places available until 14 August.
Thursday 30 July 2009
Water Baby Eva
Tuesday 28 July 2009
Jordy Pordy at Edinburgh Fringe
The play is an autobiographical one-man show written and performed by Jordan Herskowitz. The play tells the story of Herskowitz's life as a middle child of two brothers diagnosed with cystic fibrosis, being a Jewish individual growing up in Texas, and performing as a professional mascot.
The show is on from 6-30 August and anyone with a CF connection can buy group tickets at a discounted rate for the opening week only. Tickets for ten or more individuals are £6 pounds. Regular price tickets are £8, £7 concessions.
To book call the Edinburgh Fringe Office at 0131 226 0000 and for more info visit http://www.jordypordy.com/
Friday 24 July 2009
Any budding Spielbergs out there?
You can upload films from your video camera or mobile to YouTube then just send the link to gfoy@cftrust.org.uk . It's quite easy so give it a go if you haven't done it before.
Have a look at some of the videos we've favourited already http://www.youtube.com/cftrust
We look forward to seeing your handiwork, have a good weekend everyone and get filming!
Wednesday 15 July 2009
Mad people on the fourth plinth
Of course it has been a great opportunity for charity fundraisers to get up there and raise a few bob by doing something silly...step forward Susan Linnell who spent an hour on the fourth plinth at 1am this morning dressed as a rabbit whilst bouncing on a spacehopper! She has raised £765 for the CF Trust so far so well done Susan!
You can watch her in action here http://www.oneandother.co.uk/participants/susan and sponsor her here http://www.justgiving.com/susanlinnell/
If you are taking part let us know by emailing gfoy@cftrust.org.uk
Monday 13 July 2009
Lunar World Record
A team of people, comprising of some of the world's foremost astro imagers, gathered at the home of Sir Patrick Moore, a long-term supporter of the Trust, in April this year. Using specialist astronomy cameras with telescopes and special software to compile and mosaic the frames, they have created an image which has eclipsed any other so far taken of the Moon.
Monday 6 July 2009
CHARITY PLACES FOR THE GREAT NORTH RUN AVAILABLE TIL FRIDAY!
The BUPA Great North Run is the world's biggest half marathon. Every year thousands of runners take to the streets offering a fantastic atmosphere.
All runners will receive a running vest to wear with pride on the day, a fundraising pack, newsletters, access to our online interactive training zone and an invite to the post-run party complete with masseurs
Charity places are available until this Friday, 10th July. You can find out more by contacting 0845 859 1100 or email events@cftrust.org.uk.
Wednesday 1 July 2009
Well done Alex!
The scenic ride ending up in the picturesque seaside town of Hove in East Sussex was organised on behalf of several charities, including Norwood, The Down’s Syndrome Association, The Cystic Fibrosis Trust and Heart’s Have a Heart appeal. More than 1,600 cyclists got in gear to raise £300,000.
Monday 22 June 2009
Your opinions on a CF Trust DVD for children
We plan to produce a new DVD for children explaining Cystic Fibrosis. We would like to get lots of feedback from the CF community before we begin production to ensure that the DVD is appropriate and useful.
The kind of things we would like to find out are: what age your child/children started asking about CF, what sort of questions they ask, are there any questions siblings and friends ask, what are the most difficult questions to answer, and any other things you feel are relevant.
We would also like to hear about what kind of format you think would work best eg cartoons/comic strips vs real people, and whether you think this would be a useful resource overall.
We envisage that the DVD will be for children aged five and up, but again this will depend on the feedback we receive.
Please could you email any comments or suggestions to Jacqueline in the Communications Team on jali@cftrust.org.uk
We will also want to show the DVD to children with CF at various stages of the production process so if you think your child might like to be involved in this, please let me know.
We look forward to your feedback!
Tuesday 9 June 2009
Yorkshire Three Peaks Challenge
The gruelling 26-mile route took them over 3 of the county’s highest summits – Pen-y-Ghent, Whernside and Ingleborough. That’s about a mile of ascent!
Despite horizontal sleet on top of the first peak and very strong winds on the second, group morale remained high and everybody did a fantastic job and raised lots of money in the process. It is estimated that the event will have raised over £8,000 for the CF Trust.
To see some photos from the day, head over to our Facebook gallery. For a peek at some of the other Treks coming up around the UK this summer please see our website.
Monday 8 June 2009
BLF campaign to end oxygen charges on flights
Find out more from the British Lung Foundation website www.lunguk.org/media-and-campaigning/campaigns/travelling_with_oxygen.htm
Click here to email your MP about this issue http://tinyurl.com/md48jq
Click here to read a survey of 22 airlines by Pulmonary Hypertension Association UK conducted Spring 2008 http://www.phassociation.uk.com/living_with_ph/travel.asp
If you have recently had to pay to use oxygen on a flight please email us with more information gfoy@cftrust.org.uk and jjones@cftrust.org.uk
Tuesday 2 June 2009
Breathing Life Awards
Wednesday 27 May 2009
Fundraisers conquer Hadrian's Wall
The challenge started in Wallsend in Tyne and Wear and they ended up in Bowness-on-Solway in Cumbria five days later having walked 84 miles in total.
The team were inspired to complete the challenge as Julian’s 6 year old twins Elizabeth and William have CF. They have raised over £16,000 in total, making all those blisters worthwhile!
You can donate at http://www.justgiving.com/juliansheahan1
Wednesday 20 May 2009
MPs are good sports at charity football match!
The UK Parliamentary Football Club took on a team of celebs and ex-pros including Angus Deayton, DJ Spoony and athlete Darren Campbell but were blessed with good fortune when Andy Burnham scored three goals in the second half and Gus Poyet defected from the other side to score two goals for the losing team.
The Nicky’s Whisper Challenge Trophy Football Match is sponsored by National Grid. The teams play for the trophy in memory of Nicky West, who had CF and was a tireless ambassador for the Cystic Fibrosis Trust. Chelsea FC kindly donated the use of their ground for the match.
Monday 11 May 2009
Sainsbury's charity of the year nomination
Hi all,
Sainsbury's stores are taking nominations for a charity to support over the next year. Each shop will choose its own charity.
We would be really grateful you could nominate the CF Trust in your local sainsbury's and ask friends and family to do the same. They should have small black nomination slips that you just need to fill in and post in the ballot box in store.
The closing date for nominations is 26th May.
Friday 8 May 2009
New data shows future is brighter for CF patients
Results show that median predicted survival has increased from 31 years to 35.2 years. There are now more adults living with CF; 56.7% percent of those in the Registry are over 16 years of age compared with 51.4% in 2004. Encouragingly 73% of adults with CF reported they are currently working or studying.
Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust said: “We have invested a lot of time and money developing the UK CF Registry, and are pleased to see that people with CF are living full, varied and longer lives. However although median predicted survival has increased to 35 years, with many adults living into their 40s, 50s and even beyond, there are still children, teenagers and young adults dying from CF at a young age. Our work to improve clinical care and research into treating and curing CF continues to give better quality and length of life to those with CF.”
Read the full report and the press release at www.cftrust.org.uk.
Friday 1 May 2009
Good luck in the Belfast Marathon!
Click here to read more about one of our running teams taking part - Ciaran's Flyers.
http://www.belfastcitymarathon.com/news/default.asp?ID=24&itemId=10&topicId=&va=0
Thursday 30 April 2009
Big Bounce Humber Bridge
You can see the bouncers in action here http://tinyurl.com/c3wshb
Friday 24 April 2009
Good luck to all our runners
Thursday 23 April 2009
Come on Yorkshire!
Friday 17 April 2009
The Observer this Sunday
Have a great weekend!
Wednesday 15 April 2009
Shameless star takes on the GMR!
Tuesday 14 April 2009
Allison in the Daily Mail
www.dailymail.co.uk/health/article-1169269/Ive-FOUR-transplants---Im-donor-myself.html
She also appears in the BBC series Lifegivers, which goes out this week at 9.15am each day.
http://www.bbc.co.uk/lifegivers/
Well done Allison!
Thursday 9 April 2009
Read more about our victory at Twickenham yesterday!
Find out more about the match here.
http://www.rfu.com/index.cfm/fuseaction/RFUHome.News_Detail/StoryID/22430
Tuesday 7 April 2009
Prescription Charges in Scotland
For more info go to www.infoscotland.com/prescriptions
Thursday 2 April 2009
Good Luck Alex!
To find out more go to http://www.stobbs-matthewpassion.co.uk/.
Tuesday 31 March 2009
New booklet on CF and relationships
http://www.cftrust.org.uk/aboutcf/publications/booklets/
Thanks Jacqueline and Emily!
Wednesday 25 March 2009
Well done William!
Tuesday 24 March 2009
Thanks Scotmid!
We're always on the look out for new partners to work with, so if you think your company could help us by adopting us as their charity, or by matching funds raised by you, why not drop an email to Gemma on gwoodward@cftrust.org.uk who'll be happy to help you.
Tuesday 17 March 2009
Whistling for CF
www.getsurrey.co.uk/news/s/2047023_whistling_womans_unique_charity_bid
Friday 13 March 2009
Taking on Kilimanjaro
If you were inspired by the celebs last night remember you can sign up to take on Kilimanjaro for the CF Trust, like our fundraising manager for Yorkshire Tina Davis-Johnstone who is tackling Kili in August.
To sponsor Tina go to www.justgiving.com/tinadavis5
To find out more about our Kilimanjaro Trek go to
www.cftrust.org.uk/help/events/kilimanjarotrek
Monday 9 March 2009
Check out Kate in Tesco magazine
Here's some more info
http://www.tesco.com/todayattesco/lifestyle_and_fashion/kate_smith.shtml
Doesn't she look gorgeous? Well done Kate and thank you!
Thursday 5 March 2009
Prescription Charges
The Department of Health is currently reviewing the list of long-term conditions that are exempt from prescription charges. In its submission to the review, the BMA says that extending exemptions without a fundamental overhaul of the whole system will simply “create a new set of arbitrary ‘winners’ and ‘losers’”.
What do you think about this issue? Should everyone get free prescriptions? Or just those with long-term conditions?
Answer our poll here
Tuesday 3 March 2009
Prima magazine
Friday 27 February 2009
Volunteers wanted for Edinburgh Marathon
Volunteers receive a t-shirt, lunch vouchers and an invite to the post-race barbecue. Every volunteer earns a donation of £15 for their chosen charity. All volunteers also receive an Edinburgh Marathon badge, bronze, silver or gold.
You can also sign up as a team of volunteers. To find out more please go to http://www.edinburgh-marathon.com/?Contracts
Thursday 26 February 2009
First dose of gene therapy given
Interesting news story about CF
Here's some more info
http://news.bbc.co.uk/1/hi/health/7908445.stm
We asked the scientists at the UK CF Gene Therapy Consortium what they thought about this and here's what they said.
"It has been suspected for a long time that the severity of cystic fibrosis (CF) lung disease is influenced by genes other than CFTR (the "CF gene") in CF patients. By examining the genetic make-up of a large group of patients, Gu and colleagues have identified IFRD1 as having a
significant effect on lung disease: some forms of the gene are correlated with lower severity and other forms with higher severity. Interestingly, IFRD1 affects the function of neutrophils, cells of the immune system which are responsible for much of the damage seen in the lungs of patients.
The result is important because it confirms the importance of other genes in modulating CF lung disease and implies that therapies aimed at modulating neutrophil function would have a beneficial effect in CF. Such therapies could eventually become a useful addition to the existing
range of symptomatic therapies available. However, therapies aimed at correcting the basic defect in CF still offer the best prospect of providing long-term clinical benefit."
Thursday 19 February 2009
Lynsey's summer of runs!
Lynsey and husband Daniel ran their first ever 10k last year and enjoyed it so much that they decided to go one step further this year and run a half marathon too.
The keen pair have already started training, despite the recent snowy weather, but would really appreciate the support of the CF community to spur them on. If you'd like to sponsor Lynsey and Daniel, visit www.justgiving.com/lynseyanddaniel.
Good luck to both of you!!
P.S If Lynsey has inspired you to take part in a run yourself, have a look at our website to find out what's on your area.
Wednesday 18 February 2009
A night of soul for the CF Trust
Last year this event raised a fantastic £15,000 for the CF Trust.
The event takes place on 19 June at the Hotel Elizabeth in Ipswich and the theme is Soul. The band 'Still Drifting' including the original Ray Lewis from the Drifters will provide entertainment.
If you are interested in buying a table contact Bridget York on 0208 429 7530 or email bridget.york@entireaffair.com
Tuesday 17 February 2009
CF gene therapy in the news
Here's our response to this story.
A spokesperson from the UK Cystic Fibrosis Gene Therapy Consortium said
“The techniques used in this research are innovative, but more work is needed before this could be translated into clinical benefit for people with CF. The virus only carries a shortened version of the CF gene and it remains to be seen if it has the same function as the whole gene; the long-term treatment of a CF patient would require repeat administration of the virus which is usually not feasible as the body develops immune responses against the virus; and although the results are positive in human lung tissue in a laboratory, it remains to be seen if it would work in the patient.
The UK CF Gene Therapy Consortium funded by the Cystic Fibrosis Trust is currently trialling gene therapy in patients for clinical benefit. Our Wave 1 gene therapy research is using a liposome to get the gene therapy product into the body. Following this year's pilot study in humans, we anticipate going to a major multi-dose clinical trial in 2010.”
Monday 16 February 2009
Norwich City All Stars show support for CF Trust
The event has been organised by two London Marathon runners to help boost their sponsorship and will take place on Sunday 29th March at Saham Toney Playing Field in Saham Toney, Watton, Norfolk.
Gates open at 12 noon and there'll be a sporting memorabilia auction, a raffle and bouncy castles for the children.
For more information call Gordon Pitcher on 07909 544580.
Friday 13 February 2009
Sign up to the organ donor register this Valentine's Day
While 90% of people in the UK say that they support organ donation in principle, only 26% - just over a quarter of the population - have actually joined the NHS Organ Donor Register. More than 3,000 organ transplants were carried out in the UK last year, but with almost 8,000 people currently waiting, the need for more donated organs is greater than ever
Monday 9 February 2009
Bobby Dazzler
Thursday 5 February 2009
Do you know someone who deserves an award?
Wednesday 4 February 2009
Christmas card competition!
The design can be any Christmas theme you choose and the more colourful and brighter, the better. Please send your designs in to Christmas Card Designs, c/o Jo Billingham, Cystic Fibrosis Trust, 11 London Road, Bromley, Kent BR1 1BY by Friday 27 February.
We look forward to seeing your designs!
Tuesday 3 February 2009
Footballers take on abseil challenge!
Details of how to sponsor the team are available from Rochdale AFC’s press office by telephone on 0844 826 1907 or by email at mike.brookes@rochdaleafc.co.uk.
If you would like to take part in the abseil, which takes place on Good Friday and Easter Saturday (10-11 April) please call 0845 859 1100, sign up online at http://www.cftrust.org.uk/ or email events@cftrust.org.uk. All participants must pledge to raise a minimum of £75 in sponsorship which includes a £10 deposit payable when booking.
Monday 2 February 2009
Snowed in!
Friday 30 January 2009
Kelli on Noel's HQ
Tuesday 27 January 2009
Pet Corner
Monday 26 January 2009
GI Geoff
Geoff is married to Emma who works as one of our Expert Patient Advisers and was cheering him on from the sidelines.
Thursday 22 January 2009
Record number sign up to organ donor register
We think it's fantastic that so many people are now thinking and talking about organ donation, and time will tell whether this will have an impact on the current rate of transplantation in the UK. We believe that more people will get their life-saving transplant when the recommendations of the Organ Donation Taskforce to increase the number of donor coordinators who work with bereaved families and the number of specialists who retrieve organs, begin to take effect.
If you're not on the organ donation list you can sign up here
Did you know that you are more likely to need a transplant than become a donor?
Monday 19 January 2009
It's not too late to get your flu jab!
For more info contact your GP practice, visit the NHS website or call NHS Direct on 0845 4647.
Thursday 15 January 2009
Katie takes on Tresco!
Katie is aiming to run the marathon in under 4 hours - we'll let you know how she gets on!
To sponsor Katie www.justgiving.com/katieburrtresco
Wednesday 14 January 2009
If you live in Edinburgh read on....
Hi everyone
The BBC are looking for a family with a CF link in Edinburgh to take part in the new series of Trash for Cash. It will be an opportunity to educate their viewers about CF, whilst clearing your house out and making some money for yourself and the CF Trust at the same time.
The idea is that you have a team of experts show you how to turn your junk into something useful.
They are looking for a family who have a cluttered house full of useless bits and bobs. Their team of experts will help you recycle, refurbish and repair your clutter, and then sell some of it on to raise some cash to share between your family and the CF Trust.
They would like to speak to potential families on 19th January and will be filming on 30th January.
If you would be interested please contact me gfoy@cftrust.org.uk
Thanks!
Gemma
Press Officer
Cystic Fibrosis Trust
Thursday 8 January 2009
Your magazine needs you!
Tuesday 6 January 2009
Brrr it's cold outside
On the subject of cold weather we are doing a bit of research at the moment to find out if people with CF are managing to keep their homes warm and pay their heating bills.
Please do fill in our survey at
http://www.cftrust.org.uk/aboutus/what_we_do/campaigns/winterfuel
Thanks all!