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 [...]
Night Of Strength Gala 2018
Our 4th Annual Night of Strength Gala was an unprecedented success! We had 350 attendees at the Huffington Center at St. Sophia Cathedral on Saturday, November 3rd. The “Dear [...]
The basketball hoop
There’s a basketball hoop standing in my backyard. In February, Alexander begged us for it, even though his walking began to decrease in December. He loved it and was so proud of himself every [...]
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 [...]