Welcome to my Page

This year we are all in for fundraising for the Cystic Fibrosis Foundation (CFF) by participating in the Great Strides Walk in May and the CF Cycle for Life in August.

Meghan is doing fantastic and is currently pursuing a PhD at Brown University. She is an awesome young woman, and we are most proud of her.

Recent years have seen huge advances in treatments for most with Cystic Fibrosis. 90% of those diagnosed with CF have modulator therapy available to them which has led to huge improvements in health for many. Current research is evaluating these therapies in younger people with CF, evaluating the long-term benefits and risks of these therapies, and still searching for the elusive cure. Research and clinical trials are also needed to find effective therapies for the 10% of patients who are not helped by these therapies or who cannot tolerate their side effects.

The CF mantra is “Until It’s Done” and it is not yet done. The CFF has shown us how effective concerted efforts to address treatment for genetic conditions can be. CF used to be a disease of childhood. Today, 57% of those diagnosed and living with CF are adults. This is a blessing but also brings new treatment challenges. We have been personally blessed that Trikafta works for us. Also blessed that Meghan’s journey has not been as hard as many. The future is bright but research and clinical trials cost money. Finding a cure for all and a treatment for the remaining underserved 10% will be challenging.

Please, if you can, donate to help make CF stand for Cure Found.

Please be one of Meghan’s Allies and an ally to all people with Cystic Fibrosis.