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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10 Facts About FSHD — and a Reason to Smile

An older gentleman came up to me once. I had just been on TV for the Jerry Lewis MDA Labor Day Telethon talking about how facioscalpulohumeral muscular dystrophy (FSHD) affects my facial muscles and my ability to really smile and show my teeth. The gentleman put his hand on my shoulder and said with good . . .

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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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Do You Know ALS? Meet Tim.

In 2016, former NFL player Tim Green was diagnosed with amyotrophic lateral sclerosis (ALS) and was private about his new life at first. Over time, Tim has become an advocate for research to find new treatments and cures, and he found strength in his doctor and his family. He shared his story on “60 Minutes” . . .

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Do You Know ALS? Meet Sunny.

Just two weeks before her 28th birthday, and after a long search for an explanation for a series of symptoms, Sunny Brous was diagnosed with amyotrophic lateral sclerosis (ALS). Sunny has worked to remain independent and raise awareness to change the future of ALS. Her mantra is, “No apologies, no excuses, no regrets.” Can you . . .

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Do You Know ALS? Meet Dr. Glass.

Dr. Jonathan Glass is the director of the Emory ALS Center, co-chair of the Northeast ALS Consortium, and professor of Neurology and Pathology at Emory University in Atlanta. Dr. Glass’ laboratory focuses on the study of amyotrophic lateral sclerosis (ALS), investigating causes and potential therapies and cures. MDA has been a partner in research, providing . . .

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