Today was the first full day of sessions of MDA’s 2022 Clinical & Scientific Conference. For the first time since the start of the COVID-19 pandemic, clinicians, scientists, policymakers, nonprofit, and industry leaders are convening, primarily in-person, for a dynamic and informative five days in Nashville, TN. With more than 975 in-person and 490 virtual . . .
MDA’s Ambassadors are pivotal to our mission: empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to achieve their potential. We do that through care, research, and advocacy. Because the mission is big, we need big partners who can help evangelize what MDA is, what we do, and, most importantly, who we do it for. Enter, . . .
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 . . .
Meet Sylvia Hometown: Oakland, CA Age: 15 Diagnosis: I was diagnosed with Bethlem myopathy. Bethlem myopathy is a type of limb-girdle muscular dystrophy—a group of disorders affecting voluntary muscles, mainly those around the hips and shoulders. Favorite School Subject/Activities: My favorite subjects are leadership and geometry. Favorite People: My favorite person is Ellen DeGeneres and I also love my dogs Ronnie and . . .