Today is June 1 and I know many of us feel like 2016 has beat up this community already. With every small victory, we face another major setback.
As you have heard by now,…Continue
I am a genetic carrier of Duchenne. My mother was not. This means I was one of the 1:4600 females born with this genetic mutation. As a child, I had muscle cramps, ‘growing pains’ my parents would say. And from those ‘growing pains,’ 20 years later, my sons were diagnosed and I first learned…Continue
There is no way around it, today was hard. Hundreds of us – the largest gathering of Duchenne families in history – came together to tell the FDA that eteplirsen is safe, effective, and should be approved using the tools…Continue
We are not a team because we work together. We are a team because we respect, trust, and care for each other. – Vala Afshar