Greetings friends and family!
Joan and I are thrilled to be part of this year’s Great Strides walk in support of our daughter Violet and all the other CF warriors out there fighting their daily battles.
Violet is now four years old and is growing into an amazing human. She's sweet, kind, naughty and funny. She is all the things any normal 4-year-old should be; however she must endure a daily barrage of treatments and medications to keep her healthy. When Violet is healthy, she spends roughly two and a half hours per day on nebulizers, vest percussion and meds. During illness, therapies can take upwards of four hours or more.
Recently, Trikafta was released by Vertex Pharmaceuticals, which is Changing the face of Cystic fibrosis. This medication treats the disease itself, not just the effects of the disease and is greatly increasing the life expectancy of those with CF. This amazing new medication is the direct result of the research and development that is funded by your donations to the Cystic Fibrosis Foundation.
Although great leaps have been made in the battle against CF, ten percent of patients with rare mutations are not candidates for the new meds and more work must be done to find a cure. Thank you all for your donations, support and for helping fund the cure for Cystic Fibrosis.