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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Why Attending MDA’s Upcoming Virtual Pompe Disease PFDD Meeting is Vital

Ryan Colburn is a rare disease patient with a professional background in engineering and operations management, spending portions of his career working on racecars, airplanes, and rockets. Diagnosed with Pompe disease in 2015, he has spent the time since learning about rare disease topics including research, advocacy, and drug development to better understand how to . . .

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Clinical Trials During COVID-19: What We Need From the FDA

Over the course of the last several months, the US Food and Drug Administration (FDA) has undertaken many actions aimed at slowing the spread of the novel coronavirus and ensuring our first responders have the medical equipment, devices, diagnostic tools, and therapies to treat those with COVID-19. Simultaneously, the FDA has issued guidance on how . . .

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MDA Advocacy in These Uncertain Times

We know families across the country, especially those in the neuromuscular disease (NMD) community, are concerned about the spread of coronavirus and its associated disease, COVID-19, and the impact on their loved ones. In these uncertain times, MDA’s advocacy team will not stop serving and amplifying the voices of those in the NMD community, especially . . .

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MDA’s 2020 Advocacy Plan

It might only be a month into 2020, but MDA’s advocacy team and grassroots advocates are already making their voices heard. We expect the next 12 months to be crucial on Capitol Hill, and we’ll be working tirelessly in Washington, DC, to transform the lives of people living with neuromuscular disorders. Here’s a sneak peek . . .

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