Screenshot of virtual meeting with five people
Clockwise from top right: MDA Advocate Jason Morgan, Rep. Dingell's Staff Member Dan Black, MDA Advocate Cortney Damron, MDA Staff Brian Springett, and MDA Staff Mark Fisher.

MDA Advocates Returned to Capitol Hill (Virtually)

After a three-year hiatus, advocates went back to Capitol Hill, but this time virtually. On September 28th and 29th,  families from across the country raised their voices and urged lawmakers to take action on crucial issues impacting the neuromuscular community during the Virtual Summit & Hill Day. Here is a quick recap of this empowering event!

A Classic Event, Reimagined

With the ongoing pandemic and Congressional staff routinely working from home, visiting lawmakers in Washington D.C. is more difficult than ever.

However, MDA advocates used this challenge to their advantage, and were able to make an impact via a 100% digital event. Instead of long days of in-person training, participants attended two virtual trainings, where they learned the issues and crafted their unique, powerful stories they would deliver to lawmakers.

Rather than moving from office building to office building in a traditional Hill Day, advocates were able to meet with lawmakers online in the comfort of their own home. This allowed advocates to attend more meetings, touching more lawmakers, creating more opportunities to urge Congress to act on vital issues affecting the neuromuscular community.

Advocating on the Key Issues

Although there is much more we need to accomplish to truly empower the neuromuscular community, MDA advocates were ready to share their stories and urge Congress to take action on three key legislative issues.

1.Improving Air Travel

From broken wheelchairs to issues getting on and off airplanes, we know traveling by air can be a nightmare for the neuromuscular community. Advocates urged Congress to finally act and pass policies to make air travel more accessible during the 2023 FAA Reauthorization.

2.Increasing Access to Genetic Counselors

Before receiving a final diagnoses, too many in neuromuscular community face years of doctor’s visits, many tests, and plenty of misdiagnoses. Increasing access to genetic counselors and services is one way to shorten this diagnostic odyssey. Advocates urged members of Congress to cosponsor the Access to Genetic Counselor Services Act (H.R. 2144 / S. 1450), which would improve access to these vital services.

3.FDA & Clinical Trial Reforms

From outdated clinical trial design to a lack of diversity, there are many challenges in developing lifesaving therapies for the rare diseases. However, advocates urged Congress to make much needed changes in upcoming legislation to reform the way the FDA handles rare disease clinical trials and drug approvals. This would lead to more neuromuscular therapies, at a quicker pace.

By the Numbers

MDA advocates were busy during the Virtual Summit & Hill Day, and it made a big difference. Here are some quick numbers and the pictures to prove it!

  • 100 total Congressional meetings
  • 78 advocates and staff participated
  • 28 states represented
Screenshot of virtual meeting with four people

Clockwise from upper right corner: MDA Staff Paul Melmeyer, Senator Susan Collins, Sen. Collins’ Staff Member Amanda Lincoln, and MDA Advocate Sarah Eslin.

Screenshot of virtual meeting

Clockwise from upper right corner: MDA Staff Paul Melmeyer, Senator Schumer Staff Member Grace Magaletta, and MDA Advocates Jaime, Leah, and Bevsi Zelaya.

However, we know the impact of the Virtual Summit & Hill Day goes beyond the numbers. Participating advocates not only made a difference on Capitol Hill, but were also able to connect with fellow volunteers from all over the country.

The Work Doesn’t End

Even though MDA advocates made a big impact during the Virtual Summit & Hill Day, our work does not end. We need more people coming together and urging Congress to pass legislation that truly empowers the neuromuscular community.

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Next Steps and Useful Resources

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Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.