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Blog Post | Independence, Personal Stories

Queer Eye’s β€œSilver Lining” Sweeneys Stay in the Moment

The Sweeneys β€” John, 58; his wife, Jennifer, 50; and daughters Dana, 24; Rachel, 22; and Ashley, 19 β€” live in a rowhouse in a small suburb outside of Philadelphia.…

Tags: Caregiving, Relationships


Blog Post | Advocacy, Independence

Do you know your employment rights?

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…

Tags: Advocacy Updates, Employment, Resources


Blog Post | News, Research

Scholar Rock Announces Positive Results from Interim Analysis of TOPAZ Phase 2 Study of SRK-015 to Treat SMA

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

Tags: Clinical Trials, Drug Development, Healthcare, Research, Research Advances


Blog Post | News, Science + Research

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…

Tags: Clinical Trials, Drug Development, Healthcare, Research, Research Advances


Blog Post | Advocacy, News

MDA Announces New Collaboration Grants Program for Advocacy Organizations and Partners

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…

Tags: Advocacy Updates, Grants


Blog Post | Advocacy, Inclusion, Independence

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…

Tags: Advocacy Updates, Employment, Resources


Blog Post | Independence, Personal Stories

People May Not Accept Your Disability. You Don’t Have to Accept That.

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…

Tags: Employment


Blog Post | Advocacy, Inclusion, Independence

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…

Tags: Resources


Blog Post | Independence, Personal Stories

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…

Tags: Relationships, Staying Active


Blog Post | Health, Lifestyle

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…

Tags: Healthcare, MDA Care Centers, Nutrition, Resources