The Cystic Fibrosis Trust
Cystic fibrosis is a condition that destroys the lungs and digestive system. One in 25 people carries the gene that causes it and there is currently no cure. At some point in your life you will more than likely meet or know of someone with this cruel disease. The trust invests in research to fund life changing precision drugs like kalydeco and orkambi which increase the life spans of CF sufferers. Without new drugs like these CF patients have a lower life span. The average age of death for CF sufferer in 2013 was 36 years. In 2009 it was 34 years in 2016 it was predicted the median age of survival now stands at 47. THIS IS WHAT THE DIFFERENCE MONEY FOR THIS CHARITY MAKES!
The trust also helps support CF families when they need it most and it’s great to have a charity that creates a community to be part of and meet other CF sufferers and families. We have made so many friends through this charity, lifelong friends who support each other with an understanding of to what we are all experiencing.
Without the trust funding for drugs and the support they offer and the community they create would be lost and that’s why and amazing charity like this is so important to families with CF.