Amy and Jamie Shinneman Find Purpose on Their Way to the Bank of America Chicago Marathon

For the last four months, Amy Shinneman has been training to do something she never imagined doing: hitting the pavement as a participant in the Bank of America Chicago Marathon. Amy, a 45-year-old Noblesville, Ind., native, lives with Bethlem myopathy, a form of Ullrich congenital muscular dystrophy that causes muscle weakness throughout her limbs. “From . . .

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At a Cedars-Sinai Care Center, Dr. Robert Baloh Looks Under — and Ahead of — the Microscope for CMT and ALS

Even though the Martinez family lives in Burbank, Calif., within an hour’s drive to Los Angeles’ Cedars-Sinai Medical Center, their road to the hospital’s specialized clinics — to Dr. Robert Baloh and his work there — was a long one. Daniel and Gladis Martinez have two daughters: Genesis, 15, and Isabella, 14, born just 10 . . .

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Researcher with CMT Awarded MDA Funding to Discover Rare Variants for Multiple Neuromuscular Diseases

Receiving a diagnosis of a neuromuscular disease is often not easy — there can be denial, anger, grief, and a frustrating sense that maybe life is, in a way, over. For Wolfgang Pernice, PhD, however, being diagnosed with Charcot Marie Tooth disease (CMT) in his early teens didn’t bother him that much. He says his . . .

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“How Muscular Dystrophy Changed my Life”: A Diagnosis that Led to an Incredible Cross-Country Journey

In May 2019, Jon Olson set out from Astoria, Oregon to bike across the US. He’s dedicating his miles to MDA, the research and care it supports, and the community it — and Jon — represents. So far, he’s raised more than $10,000. He’s ridden more than 2,500 miles and has about 1,000 left to . . .

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This Back-to-School Season, MDA National Ambassador Justin Moy Looks Ahead to Sophomore Year

School creeps up on you! At first you look at your three-and-a-half months on the calendar and marvel at the expansive possibilities, but here I am three months later and I’ve done maybe three quarters of what I wanted to get done. It’s not to say that I’ve been lounging around, although there has been . . .

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Researcher with FSHD Awarded MDA Funding to Discover New Therapies for the Disease

Like many pre-medical students, Justin Cohen discovered along the way that what he really liked was research. However, unlike others who exchange the stethoscope for a microscope, Justin had a strikingly different motivating factor — he has been living with the disease he studies, facioscapulohumeral muscular dystrophy (FSHD), for almost as long as he can . . .

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