Two cyclists and 3,300 miles
By KATIE MCDOWELL/General Manager
I have never met Gabe Griffin, but I know his story.
The 9-year-old Shelby County resident has Duchenne Muscular Dystrophy, a rare and fatal form of muscular dystrophy that weakens muscles.
I know about Gabe because his parents, Scott and Traci Griffin, have made it their mission to share his story with the world. They founded Hope4 Gabe, which is dedicated to raising awareness of and funds to fight the disease.
In late June, they launched Ride4Gabe, a 3,300 cross-country bicycle ride designed to shine a light on Duchenne and the 15,000 American boys who suffer from the disease.
Michael Staley of Washington, D.C., and Wes Bates of Aurora, Colo., are biking about 75 miles per day, and will be joined by other cyclists along the way. The rest of the Bike4Gabe team is accompanying the team as they make their way to Mobile.
“Through awareness, I think great things can happen,” Scott said. “And I believe through this ride that great things are going to happen.”
One of Hope4Gabe’s goals is to raise awareness about eteplirsen, a drug that Scott said has been endorsed by prominent Duchenne researchers. The drug is intended to stop the progression of the disease, not reverse it.
They would like the FDA to approve the drug through the FDA Safety and Innovation Act, which allows the agency to “speed patient access to safe and effective products.”
“This drug was originally intended to stop the progression of the disease, which it has shown to do based on the two-year data from the trials,” Scott said in March. “The drug has now shown improved pulmonary function, an increase in the production of dystrophin (the protein these boys are missing), and some of the children are actually improving with zero side effects.”
Duchenne is an unforgiving disease. A child diagnosed with Duchenne will likely be in a wheelchair by age 12 and will die from the disease in his late teens or early 20s.
Ride4Gabe will end in a few weeks, but the Griffins’ fight will continue.
For more information about Gabe’s story, visit www.hopeforgabe.org.