PROMOTE PROGRESS IN DUCHENNE MUSCULAR DYSTROPHY RESEARCH
(Extensions of Remarks - August 02, 2013)

Text available as:

Formatting necessary for an accurate reading of this text may be shown by tags (e.g., <DELETED> or <BOLD>) or may be missing from this TXT display. For complete and accurate display of this text, see the PDF.

        

[Extensions of Remarks]
[Page E1223]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        PROMOTE PROGRESS IN DUCHENNE MUSCULAR DYSTROPHY RESEARCH

                                 ______
                                 

                          HON. SPENCER BACHUS

                               of alabama

                    in the house of representatives

                         Friday, August 2, 2013

  Mr. BACHUS. Mr. Speaker, it is an honor to talk about an opportunity 
before us to help some courageous children with Duchenne Muscular 
Dystrophy.
  Duchenne affects nearly 20,000 babies a year, arresting proper muscle 
development during childhood.
  Children with Duchenne, like young Gabe Griffin of Birmingham who I 
have personally met, are full of strength, spirit, and hope. They are 
an inspiration to all of us.
  Thanks to medical research and the advocacy of Gabe's parents, Scott 
and Traci Griffin, and many other parents including Joel and Dana Wood 
here in Washington, new therapies and treatments are being developed 
for children with Duchenne.
  But we all want progress to come even faster.
  The Food and Drug Administration is considering whether to allow 
accelerated use of a potential breakthrough therapy. It is a drug 
called Eteplirsen.
  While properly taking safety into account, it is important for the 
FDA to reach a timely decision on making this drug available to the 
children who would benefit from it.
  When you have had the privilege to be with wonderful kids like Gabe, 
you know that we must do everything possible to help them progress 
through a healthy and happy childhood.

                          ____________________