Charming — that’s the first word that pops to Matt Kendall’s mind when describing his 5-year-old son, Archer.
“He’s clever, mischievous — in the best way — very quick to laugh and giggle,” Matt says. Archer also has a need for speed. He likes to go really fast, whether that’s while snowboarding with his dad, boating or biking. And, like many little boys, Archer also has a flair for annoying his older brothers.
But his parents noticed that Archer wasn’t quite like other little boys, or like his older brothers when they were his age.
“He was a little slower to develop physically than his older brothers had been, though not to the point that we thought something was seriously wrong. But we had questions,” Matt says. “He would fall and couldn’t catch himself, had more difficulty going upstairs and generally lacked stamina where other kids didn’t.”
When Archer was 4 years old, he was diagnosed with Duchenne muscular dystrophy or DMD. The genetic disorder causes progressive muscle weakness and deterioration, which explained the symptoms Matt and his wife were seeing.
They explained the diagnosis as best they could to Archer, in a way he would understand.
Their little boy has adapted. He knows that his muscles are different than most other people’s, so he does his stretches every night. Archer takes deflazacort, a corticosteroid that works as an anti-inflammatory and immunosuppressant, which was recently granted approval by the FDA to treat people 5 years or older with DMD. His medication, which is the third drug approved for diseases in MDA’s program in the last six months, has helped him immensely so far, and he continues to annoy his brothers.
“He doesn’t know about the progression because we hope he never has to encounter it, but we do not, and will not, shield him from reality,” Matt says. “We just don’t believe that the past is a good indication of his future.”
“I thought we’d raise about $10,000 and that would be a good solid effort,” Matt says. “We wound up raising almost $55,000 and counting. I’m fortunate to work with and be in contact with very generous people.”
Those generous people are Matt’s work colleagues at Scopia, a New York City-based hedge fund where Matt works as a trader. Scopia triple matched donations from his coworkers, bringing in almost $7,200.
“I don’t feel I’m being myopic when I say it really is an incredibly hopeful time for muscular dystrophy. It really is,” he says, explaining that researchers are now tackling different genetic diseases — work that could open up therapies for muscular dystrophy. “There is so much promising research occurring right now that we’re truly hopeful.”
His first half-marathon may be in the history books, but Matt isn’t putting his feet up just yet. When asked if he’ll run again for Team Momentum, he says “Absolutely! Everyone is excited to do it again!”
He knows that there is still much work to be done.
“We want to fund more promising trials,” Matt says. “There is a lot of research out there that needs capital to get to the next level toward disease modifying therapy. The opportunity is now.”
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