Beginning in the early 1950s, when public awareness and understanding of muscular dystrophy and related neuromuscular diseases were extremely limited, MDA began calling upon individuals living with these diseases to serve as National Ambassadors, telling their personal stories and inspiring support of MDA. More than 40 MDA National Ambassadors, including children and adults, have met U.S. . . .
Every year, Deborah and Jeff Corbett went to their son Josh’s annual checkup with a set of questions. They checked on Josh’s chronic ear troubles and surgeries, inquired about his lagging motor skills, and at his 4-year visit, they asked about his peculiar running gait. When he was 5, they mentioned Josh had difficulty getting . . .
Jeff Shaw, program manager for MDA Let’s Play, MDA’s online gaming and streaming community, is part of a team that leads Saturday Game Nights on Twitch, celebrity streamer events for MDA, tournaments with great teams and players, and steadfast support and discussion on the MDA Let’s Play Discord server channel. Among our many great friends . . .
Researchers at the University of Pittsburgh invite parents and guardians of children with Duchenne muscular dystrophy (DMD) to participate in a study that investigates whether they utilize mental health resources and if they have encountered any barriers to accessing such resources. For this study, researchers at the University of Pittsburgh will ask participants to take a . . .
Living with neuromuscular disease (NMD) involves specific challenges — some physical, some strategic, some structural — that can create stress and contribute to changes in both physical and mental health. Can meditation, mindfulness, and other relaxation practices help? Yes, says Paige Lembeck, PhD, a pediatric psychologist and assistant professor of Clinical Child Psychology at the . . .
Personal care attendants (PCAs) play a crucial role in helping people in the neuromuscular disease community day to day. Whether they’re assisting with activities of daily living or managing medical equipment, PCAs often make independent living possible. But they can be hard to find. The first hire — or the second or third — might . . .
The Sweeneys — John, 58; his wife, Jennifer, 50; and daughters Dana, 24; Rachel, 22; and Ashley, 19 — live in a rowhouse in a small suburb outside of Philadelphia. Their street, John says, is busy — not unlike life inside the rowhouse lately. During the pandemic, the girls were living, working, and attending school . . .
Sarah Jean Schwegel, who has spinal muscular atrophy (SMA), works as the Public Policy and Advocacy specialist at Paraquad in St. Louis, Mo. In 2015, Sarah graduated from Maryville University with a bachelor’s degree in Rehabilitation Services. In 2018, she graduated from Saint Louis University with a master’s in Public Administration. Before she started working . . .
Sean Baumstark was 25 when he was diagnosed with Friedrich’s ataxia, a neuromuscular disease that affects the nervous system and heart and causes muscle weakness and ataxia, a loss of balance and coordination. “During my diagnosis,” Sean says, “the geneticist started talking about support groups and encouraging that I come to grips with what I . . .
At more than 150 MDA Care Centers nationwide, kids and adults living with neuromuscular disease (NMD) have access to multidisciplinary care teams made up of different specialists who can coordinate in one place on an appointment day to optimize a complete care plan. Included on these teams are allied health professionals and social workers who . . .