Alabama boy with rare disease inspires
cross-country bike ride for a cure
BY CLIFF SIMS - Yellowhammer News 13 MAY, 2014
An impromptu meeting in Washington, D.C. last year has now led
to an unprecedented effort by an Alabama family to raise
awareness about Duchenne muscular dystrophy (DMD), a rare
disease that causes muscle degeneration and often kills its
victims by the time they reach their late teens or early 20s.
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BREAKING NEWS UPDATE JULY 30: THE WHITE HOUSE RESPONDS TO DUCHENNE PETITION
Janet Woodcock, Director, FDA Center for Drug Evaluation and Research, delivered the official response to the online petition. Woodcock noted that the agency currently has no approved therapies for this serious and life-threatening disease. She added that the FDA is willing to explore all potential pathways, included accelerated approval, as appropriate. Woodcock's statement came in response to the gathering of more than 106,000 signatures. Posted to The White House "We the People" petition web site, Woodcock spoke on behalf of The White House saying her agency is "actively engaged with a number of drug companies focused on developing new drugs for Duchenne muscular dystrophy."
Scott Griffin said, "The Duchenne community is celebrating, and the FDA's acknowledgment is finally on the record. Our urgent pleas for access to drugs that could help Gabe and other terminally ill patients cannot be ignored. We hope and pray every day that Gabe's generation will be the first children to survive this awful disease."
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Gabe Griffin, the 9-year-old son of Scott and Traci Griffin, was diagnosed with Duchenne as a baby. The Griffin family, who live in Birmingham, went to the nation’s capital last year to lobby the FDA to approve a drug called Eteplirsen, which researchers say slows down the progression of the disease. There are currently no approved treatments for DMD.
While in D.C., the Griffins went to visit their congressman, Rep. Spencer Bachus, R-Vestavia Hills.
“I was out in the hall in front of the office and this little red-headed kid came up to me and said, ‘Are you Spencer Bachus?’” recalled Bachus’s chief of staff Michael Staley. “I said, ‘No,’ [then] I saw Gabe’s parents coming down the hallway and we sat down in the office and they told me about Duchenne. It touches your heart when you hear their story and I’ve fallen in love with the story of Gabe and the fight of the Griffin family to save their son’s life.”
Staley was so touched, in fact, that he wanted to personally do something to help the Griffins find a cure for the disease, which is relatively unknown to the public. So Staley, an avid cyclist, decided he would ride his bicycle across the entire country, from Oregon to Alabama, to raise money and awareness for Duchenne research.
On June 28, Staley and Wes Bates, an Indiana University student, will begin “Ride4Gabe” in Astoria, Oregon, ride roughly 75 miles per day, and finish their trek in Mobile, Alabama in mid-August.
“At the age when a little boy begins to fully develop into a man with strong muscles, Gabe is going to be experiencing the exact opposite,” Staley said. “Wes and I feel led to educate people about this disorder and we believe that Duchenne can be stopped and Gabe’s life can be saved. We are asking community leaders and cyclists in each city and state along our route to get involved.”
The Griffins described the effort as the “gift of a lifetime.”
“Michael and my family have become really good friends and Michael decided he wanted to do something for Gabe,” said Scott Griffin.
The funds raised by Ride4Gabe will be used to advance current Duchenne research. To ensure the majority of the money goes to research, the Griffin’s foundation is requesting donations of a motorhome and SUV for the ride, camping gear, cycling gear, food, and assistive technology to guide and safeguard the cyclists.
If you’re interested in supporting Ride4Gabe, visit hopeforgabe.org or contact Scott Griffin at (205) 542-1069.
“Traci and I live every day trying to help ‘fix’ Gabe’s problem,” said Scott Griffin.
“Our community has rallied around our efforts, and we are ready to take our message across America through Ride4Gabe.”
ABOUT THE RIDE
