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Blog Post | Advocacy, Independence, Lifestyle, News

It’s Open Enrollment Season. Here’s what you need to know!

Open enrollment — the period each year when people are eligible to purchase new insurance or make changes to their existing insurance plans — is upon us. Buying health insurance…

Tags: Healthcare, Insurance, Resources


Blog Post | Independence, Lifestyle

Tips for Setting Up an Accessible Home Office

When the COVID-19 pandemic emerged in March 2020, Matthew Lawson’s employer — like many others around the country — temporarily closed its doors and had team members go remote to…

Tags: Employment


Featured Article | Health, Science + Research

Why You’re Not Addressing Vaccine Concerns (And What You Can Do About It)

Vaccines have been protecting Americans from dangerous contagious diseases for decades and people who live with neuromuscular disease are more likely to develop severe illness from a COVID-19 exposure. Learn…

Tags: COVID-19, Featured Content, Healthcare


Blog Post | Science + Research

Research Study Alert: Observational Study of Clinical and Electrophysiological Outcomes in Adults with CMT

Researchers at Ohio State University are seeking adults living with Charcot-Marie-Tooth disease type 1 (CMT-1) and type 2 (CMT-2) to participate in a one-month observational study (CMT Establish). This study is…

Tags: Clinical Trial Alert, Clinical Trials, Research


Featured Article | Advocacy, Independence, Lifestyle

Help Wanted

Finding accessible employment in the work-from-home era

Tags: Employment, Featured Content, Resources, Technology, Year of Independence


Blog Post | News, Science + Research

Clinical Trial Alert: Phase 2/3 and Open-Label Extension Study of ASP0367 in Individuals with Primary Mitochondrial Myopathy

Researchers at Astellas Pharma Inc. are seeking individuals living with primary mitochondrial myopathy (PMM) to participate in a phase 2/3 clinical trial and open-label extension to evaluate safety, tolerability and preliminary…

Tags: Clinical Trial Alert, Clinical Trials, Drug Development, Research


Blog Post | Health

Spotting Neuromuscular Disease in Adults

After years of denial, it was the stairs to his second-floor college apartment that forced Chris Anselmo to finally face his limb-girdle muscular dystrophy (LGMD) in 2009. “I remember moving in, trying…

Tags: Healthcare, Research, Resources


Blog Post | Inclusion, Independence, Lifestyle

The Benefits of Getting Kids Involved in Adaptive Sports

When Kristine Welker’s son was young, he wanted to be as involved in sports as everyone else in the family — and that meant a high level of activity, from…

Tags: Mental Health, Parenting, Relationships, Resources, Staying Active, Young Adults


Featured Article | Health, Science + Research

How to Make a Decision About a Clinical Trial

Clinical trials come with great hope and also great unknowns. Here’s how to weigh all the factors and make the best choice for yourself and your family.

Tags: Clinical Trials, Healthcare, Parenting, Resources, Web Exclusive


Featured Article | Independence, Lifestyle

Find the Right Resources

Follow these tips to gather the tools and support you need to live well

Tags: Featured Content, MDA Care Centers, MDA Resource Center, National Connections Program, Resources