A trio of cyclists started a 2,200-mile journey from Houlton to Mobile, Alabama, on Friday, hoping to raise awareness and treatment funds for Duchenne muscular dystrophy, a rare disease that causes muscle deterioration in children and eventually death.
The cyclists covered more than half the state Friday, passing through Penobscot, Waldo and Kennebec counties before ending at a campsite in the Lewiston area.
The cyclists are Michael Staley of Alabama, Wes Bates of Colorado, and Payne Griffin, of Washington, D.C. They are accompanied by 11-year-old Gabe Griffin, an Alabama boy who has Duchenne and whose father, Scott Griffin, has started an organization pushing for a cure to the rare disorder. The father and son are following the cyclists in a camper.
The group made several stops Friday, meeting with U.S. Rep. Bruce Poliquin in Veazie and Augusta Mayor David Rollins outside the State House.
On Saturday, they’ll cross southern Maine and meet Jared Conant, a 12-year-old Yarmouth boy who also has Duchenne and who acts as a state ambassador for the Muscular Dystrophy Association.
Both the Griffins and Conant’s family are working hard to educate people about a terminal condition that affects one in 3,600 boys and an even smaller number of girls.
The disease affects children as early as the age of 3, first affecting muscles in the hips, pelvic area, thighs and shoulders, before eventually moving to the heart and lungs, according to the Muscular Dystrophy Association.
Until recently, boys with the disease did not survive much past their teenage years, but survival into their early 30s is becoming more common.
The Griffins have started Hope for Gabe, a foundation that’s trying to raise and direct funds to those researching a cure for Duchenne.
They are also using this bicycle trek – which organizers are calling Ride4Gabe – to push Congress to pass the 21st Century Cures Act, a bill that would streamline the process for testing and approving new drugs and getting them to patients.
“He looks healthy right now,” Scott Griffin said Friday afternoon, referring to Gabe, during a stop in Capitol Park in Augusta. But in the next several years, Scott went on, Gabe would be limited to a wheelchair, have trouble eating and breathing and eventually experience worse symptoms.
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