To the Editor:
In July, I met with a young boy named Gabe Griffin. Gabe is just like any young kid, he’s energetic, happy and full of life. The only difference between Gabe and other kids his age is that he suffers from Duchenne muscular dystrophy (DMD), which is a progressive muscle-wasting disorder that mostly affects boys in their early adolescence. But that’s not keeping Gabe down as he helped start the Ride4Gabe Campaign. This campaign is a group of bicyclists who ride from Maine to Alabama to help raise awareness for DMD.
Gabe is truly an inspiration to us all, but he is not the only child suffering from a rare and life-threatening disease. As a single father myself, I could not imagine the pain and heartbreak these parents must be feeling. We must do more to help find a cure for these rare diseases.
That’s why in Congress, I voted in support of the 21st Century Cures Act. This bill, which passed the House of Representatives with overwhelming bipartisan support, will help provide more resources – in a fiscally responsible manner – to health research industries, such as The Jackson Laboratory and the MDI Biological Laboratory in Bar Harbor. Additionally, this bill helps expedite the development of therapies for rare diseases by creating new incentives for laboratories.
Lastly, and most importantly, this bipartisan bill helps modernize clinical trials so the U.S. Food and Drug Administration can get results faster and approve drugs to help those suffering from rare and life-threatening diseases.
Unfortunately, this strong bipartisan bill is stuck in the United States Senate. But with your help, we can urge the Senate to act on this lifesaving bill and get it to the president’s desk. Brave kids, such as Gabe, and adults are counting on us to help find cures for these awful, rare diseases. Let’s not let them down. Join me in getting this important legislation to the president’s desk.
U.S. Rep. Bruce Poliquin