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Your Voice Matters!

Our Legislative Advocacy Team strives to bring awareness about congenital muscle disorders to legislators, and advocate for our community's needs at the federal, state, and local levels of government.

Members of the team are empowered to tell their story at advocacy events and by communicating with representatives to enact legislative change.

We support legislation that provides access to affordable healthcare, employment, education, and travel to those affected by CMD.

Additionally, we champion the funding of research, especially at the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), that will lead to treatments for CMD and other rare disorders.
If you want the patient voice heard in research, you have to be willing to get involved. - Ellyn Kodroff

Advocacy Leader, Lani Knutson during 2023 Rare Disease Day on Capitol Hill

Advocacy Partners: The Cure CMD Advocacy Team works with the following Rare Disease organizations to support legislation that affects our community. 


Federal Advocacy


State Advocacy


Other Opportunities