Thursday, 7 May 2015

My Marathon Journey

There's 24 hours to go until the ballot for next year's Virgin Money London Marathon closes.

It's the leading mass-participation charity fundraising challenge event in the UK, and this year we had more #TeamCF runners than ever!

We'd love 2016 to be even bigger, with even more of you joining #TeamCF but we know it can be a daunting experience, especially for first timers. To help you all get a feel for what it's like, Libby Sears, a first time London Marathon runner this year has shared her journey, from spectator to marathon finisher.


My marathon journey has been one unforgettable experience and one of the most memorable days of my life (so far). It has taken more courage and willpower than I thought possible.

It all started after being a supporter and spectator at the London Marathon 2014. Having watched a very good friend go through her journey, I felt inspired to take on the challenge myself. Thankfully with the help of my wonderful bosses, I secured a charity place with the Cystic Fibrosis Trust early on in the year, so I had plenty of time to get my training into action.

Arriving at the expo on Friday morning to collect my number and time chip I felt completely overwhelmed and inadequately prepared for what lay ahead of me. I was pretty much an emotional wreck, even the gentleman handing me my pack expressed concern at the look of fear on my face. I was petrified, not only at whether I could actually complete the full 26.2 miles but also the thought of letting everyone down. There was no going back.

I woke on Sunday 26 April 2015 with excitement (much to my amazement). I arrived at the Green Start in the drizzly rain and headed for the changing tent to find it full of ladies sat on the floor, in pretty much the same state as myself, constantly feeling the need to wee and looking at their phones. The time passed quickly listening to stories of training disasters (great!) and tips to get through. I was inspired once again at what these people were willing to put themselves through to raise money for charity.

The race got underway, I threw off my jumper, which unfortunately landed on some poor lady’s head!   I was swept along with the crowd of runners and found myself running at a faster pace than I had planned, but decided to go with it, even though in my head I had my friend’s words telling me not to start like a racehorse. 

The first five miles quickly passed and I found myself excited to be seeing family and friends with the CF supporters by the Cutty Sark at mile seven, and there they were just as planned, I felt great and uplifted, it was an amazing sight, full of people cheering, I was feeling great. I had no idea where I was until I saw the Rotherhithe sign and realised Sam and Michelle had planned to watch at this point, as I ran on I heard them shout my name, it made me smile from ear to ear.  

As I approach Tower Bridge I could hear the roar from the crowd, I spotted a friend from holiday who screamed my name and the CF guys going wild; people were running backwards taking selfies, I was tempted to offer to take it for them but was reluctant to slow my pace, I was on a mission!

On I went, through a tunnel before mile 15 where men and women were having a quick unseen wee and a sneaky walk, and a few meters on were Dave, Imogen, Jamie and my wonderful friends. I was so excited to see them, I felt my heart swell with pride, “I can do this”, I was feeling good. I wanted to get to mile 18 so I could see them again; all I was thinking about was who I had managed to see as I’d sped past and who I needed to make sure I saw next time. By now my knee was starting to let me know that it wasn’t happy and my pace was slowing, but thankfully I saw my support group and I managed to fight back the tears as I ran past waving like a lunatic.

Having past mile 20 and getting a phone call from Dave, all I could make out was "see you at the finish”. The next five miles were the hardest I have ever experienced; doubt was creeping in as my knee was unforgiving, the painkillers making little impact. I focused on counting down the miles, knowing I was on the home straight and trying to work out where on earth in London I was; I never have had a sense of direction. I attempted to take my jelly beans out of my pocket but ended up losing the lot in a comedy style throw them in the air attempt.

I had one goal in my head now: “Don’t stop. Whatever you do, keep running.”

The crowds were huge and the noise immense, I could no longer hear the music playing in one ear, so turned it off completely, it was time to dig deep.

Turning the corner at the Houses of Parliament everything changed, my pain had gone, I had beaten my demons, my pace increased and I sped down Bird Cage Walk excited to see Michelle, Lisa and Maria at the 600m mark. There they were, I felt exhilarated, I’d done it. Now to the finish, this was the easy bit.

I waved frantically at my mum and mother-in-law who had sat patiently in their grandstand seats, and crossed the line. The feeling of achievement was overwhelming, waiting for my photo to be taken I was trying not to cry. What an incredible day.

I have raised a whopping £25,500+ for the Cystic Fibrosis Trust thanks to the fabulous Christine and Berenice, my amazing family, wonderful friends and other incredibly generous people. Thank you CF for your support and encouragement throughout.

To Dave, Imogen, Jamie, my parents, Jamie and Hilary Gray, Michelle - Thank You.  I couldn’t have done this without you.

26.2 Smashed

Inspired to join #TeamCF? Enter the Virgin Money London Marathon 2016 ballot today!

Friday, 24 April 2015

Three marathons, three cities, three countries – one cause

This weekend, runners from all over the UK will descend on Greenwich for the Virgin Money London Marathon, running for Team CF to raise money for the fight to beat cystic fibrosis. Among those lining up will be Kyle Parsad, completing a trilogy of marathons in just five weeks, for the Cystic Fibrosis Trust.

Rome was beautiful, I loved the city when I went last year and that's what made me sign up to the marathon there for this year. I didn't quite realise it would be so difficult though, and the cobbled streets really took it out on my body! Having said that, I got through it and the first one out of three was done in a time of 4hr 08mins.



After going through the pain and how hard Rome was, Paris was playing on my mind and there was a part of me that was worried that it would be as tough. But it was a stunning route, and the organisation was second to none. I enjoyed every minute of it... up until the last few kilometres when it started to hurt, but the support from the crowds kept me going and the atmosphere makes you want to finish. I loved it, and would definitely do Paris again in a heartbeat. This one I finished in a time of 3hrs 47mins... a new PB!



Finally, at the time of writing this I will be 11 days away from the final one of my three marathon challenges... London! I finished this in 2011 and again it was the best thing, but the hardest thing I have ever done in my life. However I am more prepared, mentally and physically, for this one then I was previously.

The other two marathons have trained my mind and body to be prepared to tackle the streets of my home country! It seems a long time ago that I started all this training and a while ago that I did Rome but in the space of five weeks I will have completed my trilogy of marathons, all for such a worthy cause... cystic fibrosis. I'm very much looking forward to pounding the streets and making this my marathon, my race and the one that I will remember forever! I am someone who is lucky enough to be able to do this, I am physically healthy and CAN run...therefore it is my responsibility as someone who CAN to help those who CAN'T!

Sponsor Kyle at www.virginmoneygiving.com/kyleparsad.

Thursday, 23 April 2015

CF in Scotland: SCooP Update

Fresh from speaking at the launch for the Sixty Five Roses Club Scotland, Dr Emma France provides an update on SCooP, the project she is leading to help parents of young children with cystic fibrosis meet their child’s physiotherapy needs. The project is part-funded by the Cystic Fibrosis Trust.



I lead the SCooP (Supporting Children’s Physiotherapy for cystic fibrosis) project, an innovative and exciting project involving a team of researchers from across Scotland, England, and even Australia. Supporters of the Cystic Fibrosis Trust helped to name the project byvoting for their favourite title in an online poll. We have been working with 20 families over the past eight months to create a short film for families who have young children with cystic fibrosis from 0 to 8 years old. The film will encourage and support other families to stick to their child’s chest physiotherapy routine.

Home chest physiotherapy is a major part of the daily treatment to clear the lungs and airways of the thick mucus which can lead to infection. Parents, carers and their young children with cystic fibrosis find it difficult to stick to their home physiotherapy routine for a wide range of reasons. But lots of families have come up with their own ways around the problems they have keeping to their child’s physiotherapy routine. For example, parents told us they visualised the build-up and clearance of mucus to motivate themselves. We are drawing on the expertise and experiences of families to develop the film.

We have just finished filming with real families living in Scotland who have a child or children with cystic fibrosis. The film will show the families telling their stories about having a child with CF, doing home chest physiotherapy with them, and showing us some of the solutions that they have found to help them do physiotherapy.

Now we need 20 families from across the UK with children aged between 0–8 with cystic fibrosis to try out the film. See: http://www.stir.ac.uk/scoop/ for more details.


The 20-month SCooP project started in May 2014 and is funded by the Cystic Fibrosis Trust and the Chief Scientist Office of the Scottish Government. Emma France is based at the NMAHP Research Unit, University of Stirling, Scotland.

Friday, 17 April 2015

Why We Provide Financial Support

Trust Chief Executive Ed Owen talks about why the Trust offers grants to help those with cysticfibrosis most in need.

I am sometimes asked by supporters why the Trust chooses to provide financial grants to people with cystic fibrosis and their families when this diverts money from vital research and care.

It’s an important question, especially from those whose efforts help raise the funds we rely on to carry out our vital work – and one that I am pleased to address as we revamp the way we issue health and wellbeing grants.

I am very clear that supporting those with cystic fibrosis in most need with appropriate, focused help is the right thing for us to do. Whether it is the young person starting out on their own for the first time who needs help to buy a fridge essential for medication, or support for a hard-pressed family to purchase a trampoline to keep their child fit and active, we can make a real and positive difference to people’s lives in this way.

I am also proud that the Trust can provide opportunities to people with cystic fibrosis living on low incomes to take a holiday break which they otherwise could not afford – and to provide funeral grants of £750 to the families of those who have lost their lives to this cruel condition.

We cannot and do not, however, run a benefits service to provide ongoing support for people out of work or unable to work. This is the job of government and the Trust campaigns to ensure all people with cystic fibrosis get appropriate support.

We also do not provide support for clinical equipment such as fast nebulisers. These should be provided by the NHS and the Trust must never become a means by which health providers avoid obligations they have to provide appropriate healthcare to people with cystic fibrosis.

And many particular services required by those affected by cystic fibrosis are best provided by other organisations like the Citizens Advice Bureau. So, through our advice helpline and website, we point families and individuals in their direction.

It is vital that the financial support we do provide is focused on those in most need – and so we have changed the application system to put a particular emphasis on those on low incomes. It is also important that as many people as possible can access the scheme. So we are working closely with CF clinics to promote the grants system to those who might benefit.

Finally, it is essential that the decision on whether a grant is awarded or not is taken fairly and clearly.  So a new grants panel, chaired by Peter Sharp, a former trustee of the Cystic Fibrosis Trust and someone living with cystic fibrosis himself, and including experts in CF and welfare, assesses all health and wellbeing applications.

We are currently spending about 1.5% of the Trust’s income on financial support for people with cystic fibrosis – and it represents about a 20th of our research budget.


But, at a time of welfare cuts and austerity, the system provides an important support lifeline for people with cystic fibrosis and their families who struggle to get by. I am clear that this is the right thing for us to do, and I am hugely grateful for the work of all our supporters that enable us to fund it.

Tuesday, 14 April 2015

Health & Wellbeing Grants: The Social Worker Perspective

Today the Trust’s grants panel will consider applications for the second round of health and wellbeing grants. In this blog, Anne Calvert and Margaret McCafferty, two specialist CF social workers from Belfast, discuss some of the financial issues that people living with cystic fibrosis can face, and the importance of the Trust’s grants in supporting people during different stages in their lives.

We are from the regional adult CF centre in Belfast, covering the whole of Northern Ireland.  Individuals with CF travel long distances to attend outpatient clinics. Many are not entitled to help via the benefit system and it is costly having to travel so frequently. When someone comes into hospital they are usually admitted for a two-week period and contact with family and friends is extremely important during this time. Families not only incur the additional cost of travelling to and from hospital, but they are also spending money on meals, trying to encourage the patient to eat and supplementing hospital food. 

The first home grant has been extremely helpful to those wishing to set up independently. The availability of small emergency grants is fantastic when, for example, the washing machine breaks down! 

We have also found these grants very helpful when someone needs a one-off payment to help with unexpected costs. Many people attending our unit are parents themselves now. When they have to come into hospital they are extremely worried about the increased cost of child care. We have successfully applied for financial help to meet these costs, which goes a long way to help reduce some of the understandable anxieties for people coming into hospital. We also recently applied for a one-off grant to support someone paying for a professional cleaning service. They were going through a difficult time and felt overwhelmed by the situation. They really appreciated this help and felt better able to “keep on top “of things.

Looking forward to a holiday gives all of us a lift! The holiday grants are very important, especially as insurance costs can be very expensive. It is extremely important that people can go on holiday with peace of mind, knowing they can access medical care if they need to.

When health deteriorates the home care grant has been of significant benefit, especially when someone wants to spend as much time at home as possible. It is important they are not worried about the increased costs such as heating during this difficult time.

Individuals in Northern Ireland go to Newcastle, England, for assessment for transplantation. This is an expensive process for them and the family member who accompanies them. The grant for the assessment period has been very helpful. 


Also, for those families where they have lost someone with CF, they are really appreciative of the £750 grant to help towards funeral costs.  

Monday, 13 April 2015

Our Financial Support for the CF Community

As the Cystic Fibrosis Trust’s grants panel gets ready to consider applications for the second round of health and wellbeing grants, Support Service Manager Becky Kilgariff discusses why the Trust offers grants, and the kinds of financial assistance available.

Sometimes we are asked: “Why does the Cystic Fibrosis Trust offer grants to people and families affected by CF?” The short answer is: “Because they are needed”. Now, in an era of austerity cuts and benefit reform, we know they are needed more than ever. Our Policy and Public Affairs teams continue to campaign for the rights of people affected by CF and their carers and families, but in the current climate, our grants programme is there to help ease the financial burden.

We offer a variety of different grants to meet the needs of the CF community.

Our emergency grants can help at short notice – they are usually paid within a week of the application being received. We offer funeral grants of £750 following the death of someone with CF, hopefully easing some of the worry for families at a very difficult time. We can provide a grant of £250 for those undergoing a transplant or transplant assessment, which can bring unexpected costs. This could perhaps be travel costs for getting to the transplant centre, or for a family member to stay nearby, and these can be applied for up to two months after the costs have been incurred.

We also offer small emergency grants of up to £150 for other unexpected costs or emergencies. This can include urgent household repairs or cleaning to remove damp or mould, or replacement hypoallergenic bedding. We can also fund the first prescription pre-payment certificate for people unable to meet this cost, although we continue to campaign for prescription charges to be abolished for people with cystic fibrosis. Thanks to a generous gift from the Edward W Joseph Trust, we’re also able to offer grants of £450 to promote increased care in the home, rather than hospital, particularly at end of life. Our advice to anyone who needs an emergency grant is to contact our Helpline on 0300 373 1000 or helpline@cysticfibrosis.org.uk.
  
Our programme of health and wellbeing grants of up to £350 for goods or services is designed to help improve the health and quality of life of people with cystic fibrosis. These grants are considered by a panel every two months, and the next panel meeting takes place on Tuesday 13 April. In the past, the panel has awarded grants for gym fees and exercise equipment, fridge freezers and washing machines.

Finally, we also fund holidays for people with cystic fibrosis aged over 25s. From this week onwards, these are administered by the Cystic Fibrosis Holiday Fund – you can apply online or get in touch with them for an application form.


I hope that one day we won’t need to offer grants for people with cystic fibrosis – beating CF for good would mean an end to the financial pressures CF can bring. Until then we will continue to provide financial support where it is most needed through our grants.

Saturday, 11 April 2015

Taking on the Atlantic

Later today teams from the universities of Oxford and Cambridge will do battle in the annual Boat Race, televised around the world. But away from the cameras, two groups of friends have been training hard for an even bigger challenge – the Talisker Whisky Atlantic Challenge – to raise money for the Cystic Fibrosis Trust. At 3,000 nautical miles, it’s the equivalent of 821 boat races, non-stop. James Timbs-Harrison from the All Beans No Monkeys team offers an update on the team’s progress.

The All Beans No Monkeys team stepped up our training to a new level over the Easter weekend, rowing our boat from Christchurch over to Cowes on the Isle of Wight.
It was a real challenge at this stage in our training with tough weather conditions, some reasonable sized waves and lots of wind. We tested out a lot of the equipment we will use on the Atlantic row and got to understand how the continuous rowing and resting regime will work on our bodies.
The weekend tied in nicely to other rowing events across the UK including the head of the river race, which the team have taken part in whilst at university and the upcoming Oxford/Cambridge boat race.

The weekend row created a lot of interest from members of the public and we have already had donations made just from people seeing the boat. The team hopes to raise £60,000 for our chosen charity, the Cystic Fibrosis Trust.

Find out more about and sponsor All Beans No Monkeys.

What to know what the challenge is like in numbers? Check out our infographic below: