Mary Powell

Hi from the Powells,

 It's that time of year again and we ask for your support in finding a cure for Cystic Fibrosis.

Will's an active and healthy baseball player. He was diagnosed right after birth with Cystic Fibrosis then a few years later with the less severe CFTR-Related Metabolic Syndrome. He was hospitalized twice with pancreatitis, in 2018 and 2021, which is common with the metabolic syndrome, but luckily has not suffered from the most common symptoms effecting the lungs and digestive system. This leads to numerous lung infections and underweight/malnourishment which he hasn't experienced.

Today there are more babies diagnosed through newborn screens so that they can get early interventions to help prevent infections and really boost their nutritional needs to keep them healthy.  Luckily, there are many adults living much longer lives and having families of their own due to the progress of the last 30 years. The recent drugs, Kalydeco, Orkambi and Trikafta, have shown excellent results for CF patients, however more research needs to be done to eradicate this disease. Will's been taking Trikafta since current research showed that his overall CF health would benefit long term with it.

Please support Will and all other patients so that CF can stand for Cure Found!

 The Powell Family