Strongly


An expression of the live unlimited spirit, stories and voices of the MDA community

Amylyx Announces More Results from Study of AMX0035 to Treat ALS

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 overall survival in people with amyotrophic lateral sclerosis (ALS). The current study followed each participant in the CENTAUR trial for up to three years from . . .

Read More

October is National Disability Employment Awareness Month: What Does That Mean?

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 . . .

Read More

Know Your Voting Rights on Election Day 2020

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 the process — and MDA’s Advocacy Institute has answers to help you make a plan to vote during this election. Voting is my right, but . . .

Read More

Two Dudes, One Goal: Podcast Hosts Kyle Bryant and Sean Baumstark Envision (Then Live) Life Beyond Circumstances

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 . . .

Read More

Who’s On Your MDA Care Center Team?: Dietitians and Nutritionists

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 . . .

Read More

Research Study Alert: Everyone Invited to Participate in Survey About Improving Genetic Counseling

In order to make progress toward ensuring all future genetic counselors possess the necessary skills to improve the quality of services provided to families and individuals, researchers at the University of Texas Health Sciences Center in Houston are seeking participants for an online survey. Participants will be asked to share their opinion in order to help identify . . .

Read More

Who’s On Your MDA Care Center Team?: Speech-Language Pathologists

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 . . .

Read More