Credit: Hope for Gabe Foundation
The Ride4Gabe will be pedaling 455 miles in New York from July 31 until Aug. 2 as part of a 2,200-mile cross-country bicycling event to raise funds and awareness for Duchenne Muscular Dystrophy. Three cyclists will attempt to pedal 200 miles per day for eleven straight days from Houlton, Maine to Mobile, Alabama. The ride is about the same distance as the well-known Tour de France.
Organizers, of the Birmingham, Alabama based Hope for Gabe Foundation, are sending letters to leaders in all nine states requesting “Ride4Gabe Day” proclamations recognizing their effort and local Duchenne advocates by name. They are also requesting cooperation from the public and law enforcement especially when they are pedaling through more populated areas. Experienced cyclists, interested local individuals and others who can help Ride4Gabe raise awareness along the route are asked to contact the group via www.ride4gabe.com.
The Ride4Gabe support crew includes medical personnel, a three-man camera crew, dedicated drivers for sport utility vehicles and the Ride4Gabe motorhome. Eleven-year-old Gabe Griffin and his father Scott are going to be meeting with community leaders and following the cyclists across the country. Other special guests will join the riders at events along the route and will be announced in future releases.
“We work with people from all over the country to educate the public and Members of Congress about Duchenne and related drug approval policies at the FDA,” said lead organizer and cyclist Michael Staley. “Our message translates across the rare disease community and is especially relevant to patients and families with hope invested in precision medicine initiatives.”
Cyclists will be welcomed to join the Ride4Gabe riders for as long as they can maintain the established pace. There is no registration fee. Events are being planned to bring the Duchenne community, the Ride4Gabe team and supporters, donors and the news media together at various points along the route.
Tax-deductible donations of any size are very helpful. A GoFundMe Account has been set up athttp://www.gofundme.com/
Gabe Griffin
Eleven-year-old Gabe Griffin from Birmingham, Alabama is cute, red-headed, and freckle faced. He was selected as ‘most inquisitive’ in May by a majority of his 5th grade classmates. Gabe is the namesake of a tax-exempt non-profit—the Hope for Gabe Foundation—that works nationally to raise Duchenne awareness and research funding. “H4G” logos are commonplace in Gabe’s school and all over Chelsea. The Alabama Legislature passed “The Gabe Griffin Right to Try Act” after intense lobbying by Gabe and his supporters. In Washington, D.C., Chairman Fred Upton of the U.S. House of Representatives Committee on Energy and Commerce calls Gabe a ‘familiar face’ in support of the chairman’s 21st Century Cures legislative initiative.
Gabe’s father, Scott Griffin, holds out hope for a treatment but also understands the reality of the situation. “To date nobody has survived Duchenne,” said Griffin. “We lose children as young as 9 or 10 due to heart and lung failure. It is uncommon for a fourteen-year-old Duchenne patient to still walk and very rare for them to live past 25. Thankfully, many researchers believe we can turn around the muscle wasting caused by Duchenne within a decade.”
After getting to know the Griffin family while serving as chief of staff to former U.S. Representative Spencer Bachus, Michael Staley suggested taking the message across the country and volunteered to organize a bicycle ride. From late June to early August 2014, Staley and Wes Bates of Aurora, Colorado pedaled 3400 miles from Oregon to Alabama. The effort was very successful, raising awareness with multiple television appearances each day along with broad coverage online and in newspapers. The duo raised about $100,000 while crossing 11 states over a period of 42 days. A June 2015 cycling crash shattered Staley’s femur, postponing any hopes of a second Ride4Gabe until this year. Payne Griffin of Washington, D.C. is the third cyclist joining Bates and Staley for the 2016 Ride4Gabe.
Duchenne Muscular Dystrophy
According to Parent Project Muscular Dystrophy, Duchenne is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year worldwide). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. (http://www.parentprojectmd.