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21st Century Cures Will Bring Hope For Gabe and “The Lost Boys”


07.20.15

A few photos of the cross-country journey to bring #Hope4GabeDown South in Shelby County, Ala., there is a young boy named Gabe Griffin who lobbied his very first bill at 9-years-old and fights everyday for his life and for a cure to end the terminal disease called Duchenne Muscular Dystrophy (DMD). Duchenne occurs primarily in boys and is a rapidly progressive form of muscular dystrophy that can ultimately end in death.

Gabe’s Story

Gabe’s parents, Traci and Scott Griffin, had noticed some developmental challenges with their son when he was a baby. They would place him in his crib, and in the morning he would be in the exact same position as he was the night before. When he started rolling over and crawling his hands and arms would give out and he’d hit his head on the floor. When he finally started walking his legs would give out and his head continued to take the punishment. The Griffin’s knew something didn’t seem right, and sure enough, on June 6, 2008, they received the call that changed their lives forever. Their 3-year-old son was diagnosed with Duchenne. This disease affects 1 in every 3,500 boys and is the number one genetic killer of all boys in the world. Michael Staley, chief of staff to former Rep. Spencer Bachus (R-AL) writes in The Hill, “Duchenne kills children as young as 9 or 10 and very few will ever reach the age of 25.” Due to the lack of funding and awareness of this deadly disease, boys who are diagnosed are commonly known as “The Lost Boys.”

#HopeForGabe = #Cures2015

There’s no question that Gabe has a tough battle to fight, but you’d never know he was sick upon meeting him. Gabe’s strength, determination, huge heart, and joyful spirit captured the attention of many across the country including Staley. Upon meeting Gabe on February 12, 2013, Staley immediately fell in love with the boy and found his family’s fight to save their son’s life incredibly inspiring. In effort help Gabe and bring more awareness to the disease and the need for a cure Staley biked across the country alongside Indiana University student Wes Bates.

A map of the route Staley and Bates biked last summer.

A few photos of the cross-country journey to bring #Hope4Gabe

A Glimmer of Hope

Last week, the U.S. House of Representatives brought light to Gabe and all those affected with deadly diseases by passing H.R. 6, the 21st Century Cures Act with an overwhelming bipartisan vote of 344-17. H.R. 6 will make a huge impact on Gabe’s life and the many others affected by Duchenne through patient experience, pediatric research network, precision medicine, and modern trial design and expedited patient access. No child or patient with a disease should ever be classified as “lost” and that’s why 21st Century Cures Act is so important. H.R. 6 is more than just a bill it’s a lifeline that will transform medical research, improve drug development and delivery, and save countless lives. Gabe needs this to become law. We all do. It’s time to advance this through the Senate and put it on the president’s desk, so it can become law. The time is now. 

#CuresIn4Words: Gabe will end Duchenne

To learn more about Hope For Gabe, click here.

To learn more about 21st Century Cures, click here.

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Health (114th Congress)
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