Blog
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 time he would...
Oscar DeLaHoya posts about Walking Strong
Kobe Bryant Tweets about Alexander
Tweet from USC’s Coach Clay Helton
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 Duchenne which works to skip...
FDA – NOT FOR DUCHENNE
April 26, 2016 As I sit bleary-eyed on the airplane flying home from what should have been a “successful” trip to DC, I am still stunned and disheartened from yesterday after a grueling TWELVE HOUR meeting with...
