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 — and eventually, death — of children.

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 1 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 on Friday afternoon, referring to his son 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.

That’s why he supports the development of Eterplirsen, an experimental drug that Scott said has shown promise in helping boys with Duchenne keep walking, but that the U.S. Food and Drug Administration has not approved.

“We believe the 21st Century Cures Act is the vehicle for that,” he said.

In a news release Friday afternoon after his visit with the Ride4Gabe cyclists, Poliquin said he too supports the 21st Century Cures Act.


In Augusta, Mayor Rollins issued a municipal proclamation in support of the Ride4Gabe effort. During the short meeting at Capitol Park, he chatted with the Griffins, cheered them on in their efforts and recommended a pizza place where they could go for dinner.

In Yarmouth, Jared Conant, the 12-year-old state ambassador, and his father, Barry, are also trying to raise money for the treatment of Duchenne.

Jared was diagnosed with Duchenne a few years ago after a physical education teacher noticed that he had been struggling and he visited a neurologist, Barry said.

“It was quite a shock to me,” Barry Conant said. “It’s not something that runs in the family. It was quite a blow to both of us.

At 12 years old, Jared uses a wheelchair, but he tries to stay as active as possible, his father said, doing things such as acting as a bench coach for his youth baseball team. They raise money for research and to help those around the state with muscular dystrophy manage their own illnesses.

Barry Conant said he knows of about 45 Maine children who have been diagnosed with Duchenne.


Though they put a good face on it, he said, it is difficult watching his son’s disease progress.

“My son was growing up. He was getting to the point where he had some independence in life,” Conant said.

“Now it’s going in the opposite direction. Independence and freedom are being taken from him, and that’s a terrible thing for a parent to see in your child, the physical and mental effects that it has. If I lock you in a wheelchair and set you in front of a window, and you’re watching life go by and you’re 12, it’s terrible. That’s why we try to get out there and be active.”

But Barry said he supports the efforts of the Ride4Gabe and looks forward to meeting the team on Saturday.

“I’m excited to meet the cyclists,” he said. “But I want my son to meet this boy and welcome him to Maine. There’s only a year’s difference between (Gabe and Jared). Maybe they can stay in touch and share this journey.”

Charles Eichacker — 621-5642

[email protected]

Twitter: @ceichacker

Only subscribers are eligible to post comments. Please subscribe or login to participate in the conversation. Here’s why.

Use the form below to reset your password. When you've submitted your account email, we will send an email with a reset code.