Welcome to My Personal Page for Team Henri
Please support me as I participate in a race on behalf of the Run For Our Sons team. Together, we will go the distance to end Duchenne.
Henri has had a rough year. He stopped walking early August, shortly after his 9th birthday, 3 years too early (truly a lifetime too early). In April we found out he has early heart failure. We have diligently tried to get gene therapy through compassionate use or Right to Try from Sarepta and Pfizer, but the doors remain closed. Our current focus is on keeping his heart healthy, and making sure that he can get a heart transplant if and when it comes to that. PPMD is the best organization out there, advocating for these boys, organizing parents, care providers, and industry teams. If Henri were to get a heart transplant and then later get gene therapy perhaps he would have a long, happy life ahead of him.
Duchenne is the most common fatal genetic disorder among children. To date, there is no cure or treatment to stop the progression of Duchenne.
Those with Duchenne are truly in a race against time as their muscles deteriorate further each day. Please help us put an end to the devastating disorder by making a donation.
If you prefer, you may also mail a check, made payable to Parent Project Muscular Dystrophy, to:
Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
(Please note that the check is in honor of Henri Bigelow/RFOS)
All funds raised will benefit Parent Project Muscular Dystrophy (join.parentprojectmd.org) and go directly toward researching a cure. Your contribution is 100% tax deductible.
Thank you for your support!
My Personal Web Log
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