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Ride for Doug in Langley (updated)

Annual ride to fight Duchenne Muscular Dystrophy draws 75 riders
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Doug Penner and dad Cam hit the road with more than 70 other motorcyclists in Langley Sunday for the 11th annual Ride for Doug fundraiser for Duchenne Muscular Dystrophy. Dan Ferguson Langley Times

Doug Penner was in a hurry to get going.

“There’s no time,” the 14-year-old joked when a Langley Times reporter asked to take his picture.

Then he relented, long enough to stand with with grandparent, Walter Esau for a quick snapshot in front of some of the 76 motorcyclists taking part in a four-hour cruise through Metro Vancouver to fight Duchenne Muscular Dystrophy (DMD).

Doug, who was diagnosed with DMD when he was two, took a break, then hitched a quick piggy-back ride on his father Cam’s back to get to their motorcycle without wasting any more time.

It was a hot, bright, sunny Sunday afternoon (June 4) and the Ride For Doug was about to get underway in Langley.

There was motorcycle gear to get on, a pleasant wandering ride through the Lower Mainland with his dad and a barbecue at the end of the day.

Doug can still walk, slowly, but stairs have become more of a challenge as he slowly loses muscle strength.

The family recently installed a chair lift to help Doug get from one floor to another in their home.

“You are helping more people than just me,” Doug told the nearly 300 people who attended the end-of-ride barbecue in Langley, thanking them for their support as they applauded.

“I feel a sense that people care for me,” Doug said.

“Keep up the good work. People like you move the world forward.”

Doug’s dad Cam thanked the volunteers who pulled the event together

“Thank you for your time, your energy, your sweat, and your fundraising,” he said.

Cam said Doug is once again receiving a trial drug that helped to slow his loss of strength and keep his condition stable.

The drug, Drisapersen, was discontinued about a year ago by the manufacturer after it failed to win final approval from American health authorities,

“You can imagine what a blow to our world this was,” Cam said.

“We were seeing promising results and to have the rug pulled out from under our feet was devastating.”

After seeing his son’s condition stabilize with Drisapersen, Cam said the family has had to watch Doug suffer a decline in strength and endurance.

“His muscles are weakening despite receiving the best care possible,” Cam said.

“The one medication that seemed to make a difference (was) sitting on a shelf, slowly expiring.

But now, after sustained lobbying, the remaining stock has been acquired the CureDuchenne charity, which obtained approval for Canadian health authorities to dispense the drug to five boys including Doug who were previously on it and didn’t show serious side effects.

There is enough left of the drug for about a year of infusions, Cam said.

“Nobody’s making any more.”

Doug has received two infusions so far, Cam said, but it will take between six months and a year to know whether resuming Drisapersen therapy has the desired effect.

“This is the result of countless people working hard behind the scenes,” Cam said.

“It is the result of many of the people in this room praying for Doug and his medication.”

Hope, Cam said, is like a weed.

“Growing where not expected, and sprouting up quickly where it has no right to be. And like a weed, hope needs to spread. It needs us to brush up against it, it needs us to capture its burrs on our riding boots. And it is these seeds of hope that need to travel with us.”

Another drug similar to Drisapersen was recently approved by American authorities to treat DMD, but it is extremely expensive and unavailable outside the United States.

“Unfortunately, no health insurance is going to cover a Canadian patient receiving a U.S.-only drug,” Cam said.

“One of the American boys we know has started on it. He pays $20,000 (U.S.) per week, based on his body weight. Doug weighs twice as much.”

This year’s ride raised $26,500 for Muscular Dystrophy Canada.

DMD is an inherited disorder, which usually affects boys, rarely girls.

The muscles become weaker as boys get older because the body cannot make the muscle protein called dystrophin.

According to the Wikipedia entry about DMD, the average life expectancy for a person with DMD is 26, but “with excellent care, some may live into their 30s or 40s.”

Gene therapy to treat Duchenne is in the early stages of study in humans.

The fourth annual Ride For Doug on Vancouver Island will take begin and end in Langford on Sunday, Sept. 10.

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Doug suits up with the aid of dad Cam. Dan Ferguson Langley Times
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Doug with grandparent Walter Esau. Dan Ferguson Langley Times


Dan Ferguson

About the Author: Dan Ferguson

Best recognized for my resemblance to St. Nick, I’m the guy you’ll often see out at community events and happenings around town.
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