[Congressional Record (Bound Edition), Volume 159 (2013), Part 9]
[House]
[Page 12448]
[From the U.S. Government Publishing Office, www.gpo.gov]




           HELPING CHILDREN WITH DUCHENNE MUSCULAR DYSTROPHY

  (Mr. BACHUS asked and was given permission to address the House for 1 
minute and to revise and extend his remarks.)
  Mr. BACHUS. Mr. Speaker, it's an honor to talk about some courageous 
children who are changing the way that we think about Duchenne Muscular 
Dystrophy. It affects nearly 20,000 babies a year in the United States, 
robbing them of the muscle development they need to grow into a healthy 
childhood.
  These children, like Gabe Griffin of Birmingham, who you see in this 
photo, are full of strength, spirit, and hope. They inspire all of us. 
As he grows into adulthood, his muscle development will be arrested if 
we don't make progress.
  Thanks to research and advocacy by parents like Gabe's, Scott and 
Traci Griffin, as well as Joel and Dana Wood, here in Washington new 
treatments are being developed for Duchenne. But for families, the 
progress needs to come faster. The FDA is now considering whether to 
grant accelerated approval to a potential breakthrough therapy. It's a 
drug called Eteplirsen. While properly taking safety into account, it 
is important for the FDA to make a timely decision on this drug.
  When you look at this picture, you know that we must do everything 
possible to help these amazing young people to enjoy the happy and 
healthy childhood that so many of us were blessed with. Let's do 
everything we can to urge the FDA to research this drug and make it 
available to the general public.

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