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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…

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.…

As we wrap up National Disability Employment Awareness Month, it is vital those living with a disability know their employment rights, learn what to do if they feel their employer…

On Oct. 27, Scholar Rock announced positive results from an interim analysis of its phase 2 clinical trial evaluating SRK-015, a therapy for treating spinal muscular atrophy (SMA). After six months…

On Oct. 16, Amylyx announced an update from its CENTAUR trial evaluating the effects of the investigational drug AMX0035 (a combination of the small molecules sodium phenylbutyrate and taurursodiol) on…

We are excited to announce the launch of a new MDA program to foster partnerships and fund innovative work for the neuromuscular disease (NMD) community: MDA Collaboration Grants. An expansion…

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…

Tomeca Goodwin, 46, lives with a form of limb-girdle muscular dystrophy (LGMD). Born in Cincinnati, where she still resides, Tomeca has had a long career in community health. She also…

Elections are fundamental to a thriving democracy, and it’s vital everyone can exercise their right to vote, including those living with a disability. We know you may have questions about…

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…