Archives

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…

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…

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…

September is Newborn Screening Awareness Month, and today, Sept. 7, is World Duchenne Awareness Day, dedicated to spreading knowledge about Duchenne muscular dystrophy. As we honor both, we’re providing an…

Lainie Ishbia, MSW, is a mom, wife, blogger, fashionista, and disability and empowerment speaker. She wears leg braces and struggles with buttons and everyday fine motor tasks because of a…