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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


Blog Post | Health

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…

Tags: Healthcare, MDA Care Centers, Resources


Blog Post | Advocacy

MDA Partners on Pilot Program in North Carolina to Screen Babies for DMD

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…

Tags: Advocacy Updates, Newborn Screening


Blog Post | Inclusion, Independence, Lifestyle, Personal Stories

Look & Feel Your Best During Stressful Times: Tips From a Disability Fashion Blogger

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…

Tags: Independence, Innovation, Resources, Staying Active


Blog Post | Advocacy

Reporting Back on MDA’s First-Ever Virtual Hill Day

When the COVID-19 pandemic made meeting in person impossible, MDA’s Advocacy program needed to shift from in-person to virtual meetings with lawmakers. In early August, volunteers met with their lawmakers…

Tags: Advocacy Updates, Ambassadors, MDA Care Centers, Summer Camp