David & Marcy Fasano's Fundraising Page
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Our son Dylan, now 7, was diagnosed with Duchenne Muscular Dystrophy when he was 3 years old. This is the first time we are making this very public notification about Dylan because of how hard it is for us as a family.
Duchenne is the most common fatal genetic childhood disorder. It is a very progressive muscle wasting disease primarily affecting boys. Most boys are wheelchair dependant by age 12 and most do not live beyond their 20's. There is no cure.
Almost 5 years ago, we met a very remarkable woman named Christine McSherry. She also has a son with Duchenne who is now 13. After her son Jett was diagnosed, she started a foundation dedicated to fighting this devastating disease. The Jett Foundation, in collaboration with Mass General Hospital, recently opened a new multidisciplinary clinic dedicated to helping our boys. This clinic is the first of it's kind in New England. In addition to supporting the clinic, the Jett Foundation is also supporting research to fight this disease. We have started this fundraising page to support the work of the Jett Foundation in hope that Dylan and all the boys living with Duchenne will live longer, healthier lives.
Our family in conjunction with the Jett Foundation is searching for existing compounds that can help save this generation of boys, together, we are embarking on an exploration to discover readily available compounds currently on the market that can alter the course of muscle disease progression. What makes this so different from other research projects - FAST RESULTS - in a short time - for far much less of a financial investment. The plan is to rapidly screen a number of compounds to be assessed in parallel and to determine if any appropriate candidates arise for the prevention of muscle degradation and ultimately, the stabilization of muscle strength. This ground-breaking technology will test dozens of compounds alone and in combination to determine a proposed cocktail that can be moved quickly into human clinical trials.
As parents of a young boy struggling with DMD, we have witnessed firsthand, and actually rode the rollercoaster of "what is working and what is not"...spent countless hours researching on our own, spent thousands of dollars on supplements and prayed each day for an opportunity to give us answers - well, it is finally here.
Thank you for supporting the work of the Jett Foundation. And thank you for caring for Dylan and all the boys like him. Your help gives us hope. Please forward this page on to everyone in your contact list to help us spread the word. The more the merrier because time is of the essence for boys with DMD.
Many thanks for your support.
David and Marcy Fasano