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BIDDEFORD — Matthew Denger was active in his community. He was a sophomore at the University of New England, an intern for U.S. Sen. Susan Collins, and well-regarded among his peers.

But in 2013, at age 20, Matthew lost his battle with Duchenne muscular dystrophy, a rare disorder characterized by progressive degeneration of muscle tissue.

Now his father, Brian Denger, is working to spread awareness about the disease that took his son’s life. On Saturday, Denger will join three other cyclists in the Ride4Gabe, a 2,200- mile bike ride from Houlton to Mobile, Alabama, to spread word about DMD and inspire people to do the same.

“I think it’s important for me to get out there, to raise awareness, because there are many people out there affected by the condition,” Denger said Wednesday. “For me to represent the state of Maine where there may be only 40 families total dealing with this disease, I think it’s important to let people realize that this condition does exist, that it affects my family, and any amount of money raised making people aware this condition is around is extremely important to me.”

Denger, a recreational cyclist, said he likely won’t make it to Alabama. But he’s hoping to at least make it through a single 200-mile day of cycling once he joins the trek in Winthrop.

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This is the second Ride4Gabe trek, a fundraiser sponsored by the Birmingham, Alabamabased nonprofit organization

Hope for Gabe. The organization was founded in 2008 after its namesake, 11-year-old Gabe Griffin of Alabama, was diagnosed with DMD when he was 3 years old. The organization’s mission is to support efforts to cure DMD.

Denger said he isn’t seeking sponsors for his ride. Instead, he’s hoping his message will motivate people to donate to Parent Project Muscular Dystrophy, an organization he works closely with to spread awareness about the disease.

“People don’t realize the amount of burden that (DMD) places on families and the limitations it puts on the individual who has to rely on others for bathing and, at a certain point, even eating,” he said.

According to PPMD, DMD most commonly affects boys. Many who are diagnosed with DMD do not survive past their late twenties, often succumbing to the disease once their cardiopulmonary muscles begin to degrade.

The disease affects 1 in every 3,500 live male births, and about 20,000 new cases are diagnosed worldwide each year.

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It’s a statistic that’s all too real for Denger, whose second son, Patrick, also suffers from the disease, although his case is not as severe as his brother’s was. Patrick, who turned 22 on Wednesday, has been driving a modified van for nearly three years, defying all odds.

“In my mind, we were dealt a set of cards, and that’s the hand we have to play,” Denger said. “What we do with those cards we were given and how we live our life, it’s up to us. We have the choice to dwell on the negative aspects or find some positives.”

Aside from raising awareness about DMD, Denger was able to enroll Patrick in a clinical trial for a new drug to treat the disease this past January, flying to Baltimore every week for treatment. The drug sponsor saw too many negative side effects, however, and the trial was stopped in mid-July. But the family hasn’t given up hope.

Denger also speaks to medical students at UNE, where Patrick, like his brother, is a student. Denger says he talks specifically to first-year medical students in the hopes they’ll be inspired to research rare illnesses including DMD.

“I’m hoping that I can inspire them to look at rare diseases, and look at individuals who are affected by a rather extraordinary condition, to be more empathetic and work harder to receive the care they require to live the life that they choose,” Denger said.

And despite having been dealt a difficult hand, Denger said he isn’t choosing to focus on the past. As his tires hit the road early Saturday morning, he will be keeping his head high while pedaling toward a cure.

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“I guess I could be the type who could be very dark about this,” he said, “but I choose to look for the silver linings.”

CORRECTION: A previous version of this article’s headline misstated the name of the disease for which Brian Denger is raising awareness. The headline should have stated Denger is raising awareness for Duchenne muscular dystrophy (DMD), not multiple sclerosis (MS). 

— Staff Writer Alan Bennett can be contacted at 282-1535, ext. 329 or [email protected].


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