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 . . .
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 . . .
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 . . .
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 . . .
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 . . .
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 . . .
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 . . .
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” . . .
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 . . .
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 . . .
