Announcing MDA’s New National Community Advisory Committee

At MDA, families are at the heart of everything we do. As we enter a new year, we are excited to announce a new initiative that will help us better connect to, empower and serve our community. And we invite you to be a part of it!

The National Community Advisory Committee is a group that will advise MDA on matters of importance to families living with neuromuscular diseases and help inform MDA’s efforts to support individuals to live unlimited.

The committee’s preliminary goals include:

  • Serving as a focus group, sounding board and committee of subject matter experts for MDA, providing a deep understanding of the current (and future) life experiences, challenges and opportunities of individuals living with neuromuscular conditions;
  • Creating a community of peer-support and resource-sharing that informs MDA of timely issues and events for the neuromuscular community, and;
  • Representing the diversity of opinions and ideas of the neuromuscular community and sharing feedback so that MDA can best support community needs.

The charter committee will consist of up to 15 individuals. Members must be at least 18 years of age. Up to one-third of the committee will be rotated every year to provide opportunities for other members of the MDA community to participate. The committee will meet once a year in person (expenses paid) and participate in quarterly conference calls.

This is where you come in! We are currently accepting applications for the inaugural committee. If your goals as an advocate and spokesperson align with the goals listed above and you meet the eligibility criteria, we want to hear from you. Raise your hand (and your voice) to share feedback and opinions through structured meetings and leadership opportunities.

To learn more and to express your interest, please fill out this short application. We will be accepting applications until January 31st.

Together, we can ensure that MDA is supporting individuals and families with neuromuscular disease in every way possible.