One camper is stuck in Megan Relford’s brain. Since starting with the Muscular Dystrophy Association a decade ago, Relford has always counted camp week as one of her favorite times of the year, miraculous days when children suffering from various forms of muscular dystrophy come together for a free, week-long camp to swim, make music and even ride in the sidecars of Harley-Davidson motorcycles.
“He was a first-timer,” Relford said of the 12-year-old boy, whose mother was nervous to see him go to camp alone. “Whenever I thought I knew where he was, he wasn’t there. If I thought he was in the pool, he was going down the water slide, you know?”
This young teen with MD was the only kid in his school, town and possibly county suffering from the genetic disorder. MDA summer camp was his first time to be immersed in an environment of his peers, other children experiencing the gradual weakening of muscles and immobility that comes with MD, a disorder where the body doesn’t make the proteins needed to build and maintain healthy muscles.
“He was always so busy I could barely pull him aside to chat,” said Relford.
Finally, as parents came to collect their children at the close of the week, Relford caught up with the boy and his mom.
“He told me he cried when his mom dropped him off but then forgot all about it. She told me he cried when she came to pick him up, because he didn’t want to leave,” Relford said.“That may not sound like much to you, but, for us, that is a success. For him to be around other kids who are facing the same struggles – it was an eye-opener for him that he is not alone.”
September is all about eye-opening for the muscular dystrophy community, the one month of every year dedicated to spreading awareness of MD.
“These diseases are so devastating that people are dying before they get to their 20s,” said Relford, the director of the MDA’s Charleston chapter. The MDA is concerned with 43 diseases and nine types of MD, from the more common Duchenne MD to extremely rare cases of Limb-Girdle MD, facioscapulohumeral muscular dystrophy and myotonic MD.
“We see these diseases and work with the families every day, but they are very rare diseases. For us, an awareness month is a big deal. It’s hard for us to get folks on board and aware of these when there are much more predominant diseases out there,” Relford related.
This year, the MDA has good reason to be more impassioned than ever before – three good reasons, in fact.
“In the 10 years that I’ve worked with MDA, I’ve never been able to tell a family that there is a treatment for the disease,” Relford explained. “But in the few months around last Christmas, the FDA approved three new treatments – two for Duchenne and one for spinal muscular atrophy.”
It’s been a landmark year for MD research and treatment. In the past 12 months, the FDA approved Exondys 51 and Emflaza for Duchenne MD, Spinraza for spinal muscular atrophy, and during the first week in July – ALS Awareness Month – another drug, Radicava, to treat ALS.
“It’s the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years,” wrote Amy Madsen in a celebratory post on the MDA’s website.
When I talked to Relford in July, she was buzzing.
“We’re all kind of coming off of our camp high because camp ends today,” said Relford.
As MDA launched into it’s biggest outreach month of the year, bolstered by the latest FDA news, Relford brought it back to that one camper.
“He came back this year,” she smiled.
For Relford, the MDA, and the families affected by MD, sharing the impact one week of camp can have on a child’s life is what MD Awareness Month is all about.
