When MDA launched the MDA National Connections program last year, there was no doubt it would be invaluable for fostering relationships, especially during the pandemic. It didn’t take long to see that the MDA community was eager to build connections, with interest coming from families and people of all ages, from parents of children to individuals . . .
Bella, a 15-year-old in Fort Worth, Texas, loves jellyfish, horses, anime, Billie Eilish, reading sci-fi and fantasy, and making art. But living with Friedreich’s ataxia (FA) makes it hard for her to engage in some of her favorite activities. “I can draw and paint for only a few minutes before my hand starts to hurt, so I . . .
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 . . .