Photo courtesy of Scott Griffin.
0614 rideforgabe
Michael Staley, right, shares a meal with Gabe Griffin and his family.
Michael Staley listened as 9-year-old Gabe Griffin thanked him on the phone.
Gabe paused and then asked Staley if his legs were going to get sore. Staley told him yes.
Staley could bike 2,500 miles from Astoria, Ore., to Mobile, but instead, he is riding across Iowa before heading south — a total of about 3,300 miles. He plans to conquer about 75 miles a day.
“The sacrifice, the pain and any other suffering I have to do for 50 days is not anything,” the chief of staff for U.S. Rep. Spencer Bachus said. “It is nothing compared to what the Griffin family and all the other families that are impacted by this do on a regular basis. That will be my inspiration. Gabe will be my inspiration.”
Staley and Wes Bates, an Indiana University student, are bicycling across America for Gabe, a Highland Lakes resident who has a rare muscular disease, Duchenne muscular dystrophy.
“When [Gabe’s parents] told me about Duchenne and about what Gabe’s life is going to bring to him, I instantly wanted to be involved in their effort,” Staley said.
Duchenne is a rare disease that affects about 15,000 boys in America and is caused by an absence of a protein that keeps the muscles intact.
Scott Griffin, Gabe’s father, said Gabe could be in a wheelchair by the time he is 11 or 12, and his life expectancy is only about 20 years.
“For a guy who didn’t know this little, red-headed boy at all to grow closer with us, and then want to take it even a step further to raise awareness and ride a bicycle across the country, there are no words that can express how deeply moved our entire family has been from this,” Griffin said.
Staley met the Griffins when they were visiting Alabama delegates trying to push approval of the drug eteplirsen, which is awaiting approval by the FDA. Griffin said the drug has proven to have positive effects against Duchenne.
“Michael doing this ride across the country is going to really raise awareness about all of this,” Griffin said. “There is a drug out there that can save my son, but we can’t get it. Things are moving forward and are positive, but we need this drug now.”
Staley said he and Bates want to educate the public, inspire other people to want to get involved, and help save Gabe and all the boys like him.
“I am in a time in my life where I want to give back, and I want to do something that will make a difference. I also love cycling,” Staley said.
The bike ride started June 28 and will end in mid-August. As Staley and Bates ride through Alabama, Staley said there will be events in Huntsville, Birmingham, Montgomery and Mobile where they will end their ride. More awareness about Duchenne can lead to more funding for research, and possibly a cure, Griffin believes.
“Gabe could be part of the last generation of boys that die from this disease, and Gabe could be a part of the first generation of boys who can live with the disease,” Griffin said. “That is how significant this drug is.”
For more information or to make a donation, visit hopeforgabe.org or call Scott Griffin at 542-1069.
