Improving Air Travel for People Living with a Disability

Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. We sat down with Paul Melmeyer, MDA’s VP of Public Policy and Advocacy to hear about his recent appointment to the Air Carrier Access Act Advisory Committee and the Association’s work on accessible air . . .

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How Expedited Drug Approval Impacts the Neuromuscular Disease Treatment Landscape

The urgency of the COVID-19 pandemic has transformed the drug-development landscape, driving rapid development, US review, and, in one case, new therapeutic approval. To bring critical drugs to market, the US Food and Drug Administration (FDA) is utilizing a special emergency program announced in April 2020 to accelerate approval of promising coronavirus therapies, an initiative . . .

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MDA’s 2021 Advocacy Plan

2021 is a new year: The country has a new administration, and a new Congress has been sworn in. What isn’t new is MDA’s commitment to working tirelessly in Washington, DC, to transform the lives of people living with neuromuscular diseases (NMDs). Here’s a sneak peek at some of the issues we’ll be working on . . .

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MDA Advocacy’s 2020 Year in Review

There’s no doubt 2020 has been a challenging year, but the commitment and passion of our MDA advocates have truly been a bright spot. As we close out the year, let’s recap your amazing accomplishments. Access to care and therapies from day one Thanks to the actions of advocates, together we made sure the lifesaving . . .

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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 is not making accommodations required by law, and see how they can take action on legislation that would provide even more incentives for companies to . . .

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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 . . .

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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 virtually — for the first time — to urge elected officials in Washington, DC, to end the process of surprise medical billing, which can be . . .

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What the COVID-19 Pandemic Can Teach Us About the Isolation Those Living With Neuromuscular Disease Experience Every Day

In March 2020, MDA asked our advocates how the novel coronavirus pandemic was impacting their lives. New Yorker Robert Paulson shared his story — and the universal truth about how neuromuscular disease (NMD), like COVID-19, creates isolation. But for those living with amyotrophic lateral sclerosis (ALS) and other forms of NMD, that isolation doesn’t always . . .

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