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
Paul & Noah.
What is the National 3 Peaks Challenge?
To climb the 3 highest mountains in the UK (Scotland, Cumb & Wales) in 24hrs.
Due to varying traffic conditions it isn't always possible to complete the challenge in 24 hrs - even if the climbs are completed within the time targets set for the challenge. The standard for measuring this challenge will be mountain time plus a set 10hrs for driving. Giving me 14hrs to complete the 3 climbs. Ben Nevis (Start Sat 26th Sept a.m) Scarfell (overnight Sat) Snowdon (Sun 27th a.m Finish).
- Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.