Paul's National 3 Peaks Challenge 26th-27th Sept 2015
Fundraising for Cystic Fibrosis Trust
Fundraising for Cystic Fibrosis Trust
Why I'm taking part in the National 3 Peaks Challenge for the Cystic Fibrosis Trust.
Shortly after he was born in June 2013 we discovered that our son Noah has Cystic Fibrosis (CF).
CF is a life-shortening genetic condition. Only half the people born with the disease live to celebrate their 40th birthday. It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation that can eventually destroy the lungs. There is no cure.
1 in 25 people carries the faulty CF gene. Each parent must have a copy of the faulty gene for a child to develop the condition. Neither of us had a family history of CF
The Cystic Fibrosis Trust is a brilliant charity that provides information and support to CF sufferers and their families. It also lobbies government and raises awareness of CF.
It also funds much needed scientific research into CF that will hopefully, one day, find a cure.
You can be sure that your donation will make a real difference as the treatment and drugs available to people born with CF has improved dramatically during the past 50 years.
In 1966, 80% of children born with CF died within five years and 90% died by their 10th birthday. In 2014, many can expect to live into their 40s and beyond.
And there’s more good news, the Trust has been funding the UK CF Gene Therapy Consortium (GTC) to develop a gene therapy product with the potential to 'correct' the faulty cystic fibrosis gene in the lungs.
Gene therapy is a way of treating a disease by adding a copy of a healthy gene to the do the job of a faulty one.
When Noah is around 5 years old (hopefully sooner) he'll be a candidate for gene therapy.
The gene therapy product developed by the GTC is currently in Phase 2B clinical trials, with results expected later this year. If the product proceeds to Phase 3 trials, the cost can be in excess of £100million. Because the Trust cannot afford to fund this a pharmaceutical partner will be needed but, in the meantime, fundraisers are doing everything they can to support the Trust and its work.
If you’d like to find out more about the Cystic Fibrosis Trust visit: www.cysticfibrosis.org.uk
Many thanks
Paul & Noah.
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