Reaching new heights to fight Duchenne
Michael Staley had no knowledge of Duchenne muscular dystrophy prior to a chance meeting in 2013. Scott and Traci Griffin had traveled from Chelsea, AL to Washington, DC to meet with and educate members of Congress about this genetic disorder, one that their son, Gabe, was living with. Staley, then chief of staff to Rep. Spencer Bacchus, was asked to meet with the family.
“Gabe sparked something in me,” Staley says. “I would think about him in the coming weeks and the fight he was forced to take up. I called his dad a few months later and shared the idea of Ride4Gabe (RFG) with him. 77 days later, Wes Bates and I were pedaling bicycles from Astoria, OR to Mobile, AL.”
The fourth iteration of R4G will take place July 28-August 3. Staley, along with Brian Toone and Demetrious White, will pedal 1,500 miles, starting in Birmingham and culminating with a 100 mile ascent to the top of Pike’s Peak near Cascade, CO.
“Our first ride in 2014 took us 3,400 miles through 11 states,” Staley says. “It was a rush, seeing some incredible parts of our country, but there were challenges in what we did. It’s a huge logistical challenge to put it together.”
Staley pauses a moment. “But it’s nothing compared to the fight Gabe takes up every day just to see the next day.”
Duchenne muscular dystrophy, or DMD, affects approximately 15,000 people in the United States. DMD is a genetic disorder characterized by progressive muscle degeneration and weakness. It is a hereditary disorder, and while it can occur in females, males are much more likely to be affected. Symptoms typically appear around 3-5 years of age, and they can include muscle weakness, enlarged calves, and by the early teenage years, heart and respiratory muscles can be affected.
Research has improved the outlook for those with DMD, but it remains underfunded. R4G raises not only awareness of the condition, but also money for research into treatment for DMD.
Gabe’s father, Scott, says the need for funding can’t be stressed enough. “The Hope for Gabe Foundation has helped fund research at Nationwide Children’s Hospital for a drug called Follistatin,” he explains. “We’ve partnered with other foundations to fund microdystrophin and CRISPR trials and to explore other gene therapies like GALGT2 as well as funding research for VECTTOR technology in the past.”
But for Gabe, the connection to Michael and other cyclists resonates with Scott.
“The cyclists and Gabe have become like family,” says Scott. “Everyone is all in and they fight for Gabe as if he was directly related to them. We joke that Michael is another father to Gabe, and the cyclists are his siblings.
“It is amazing what can be accomplished when people come together and fight for a little boy that many did not know until a few years ago. To say this group is close is a major understatement. We are so blessed to have these people in our lives, and as long as they continue to ride for Gabe we will win this fight!”