AdCom Sarepta Votes yes

Debra Miller Representing Patient Advocacy Community

My name is Debra Miller, founder and CEO of CureDuchenne, and the mother of an incredible son, Hawken, who has Duchenne muscular dystrophy. I’m here today to represent the voice of patient advocacy organizations serving those impacted by Duchenne – all of whom are in support of the accelerated approval of SRP-9001.  

Duchenne Moms

Why Mothers Should Be Celebrated Every Day

There is no way to be a normal parent, when you have abnormal circumstances. The important thing is that you keep getting up every day loving those kids. You may think it’s not enough, but your children see you differently than you see yourself. I have days that I feel like super mom and days that I feel like a huge failure. “It’s just too hard,” I mumble to myself as I crawl into bed at night unsure of how I will possibly do the whole thing again tomorrow.