Water – A refuge from Duchenne
I am sitting and watching my boy experiencing freedom. Free from his wheelchair, free from constriction, and tightness and free from Duchenne – for a moment. We are in Miami, basking in the [...]
Duchenne Parent Guide for Sanity
It is not often that we find tools and resources for parents for coping and living with Duchenne. Each one of us is consumed in finding the best therapy for our boys, getting them into the [...]
FDA Finally Approves First Ever Treatment Drug – Finally!
100 days after the FDA’s legally mandated decision date,the FDA announced accelerated approval for Eteplirsen by Sarepta Therapeutics. Eteplirsen is the first therapy drug approved for [...]