We are excited to announce the formation of the Cure CMD Advocacy Advisory Council. Over the past seven years, the Cure CMD Advocacy team has grown its involvement in legislative advocacy through the hard work and dedication of our CMD advocates. The creation of the Advocacy Advisory Council will increase our influence by creating a collective voice for change. Join us as we launch into a new era of CMD advocacy!
The purpose of the Council is to:
act as an advocacy voice on behalf of Cure CMD
identify issues important to the congenital muscular dystrophy community,
monitor proposed legislation relevant to the CMD and rare disease community at all levels of government
help promote opportunities for the CMD community to participate in advocacy,
develop advocacy resources
create a long-term strategic plan with goals specific to advocacy.
Volunteer members will commit to attending quarterly, one-hour virtual meetings for one year, with renewable terms. As a member of the Council, you will contribute to identifying high-priority advocacy initiatives and action plans. You will be encouraged, but not required, to participate in events and activities between meetings. Our first virtual meeting will be scheduled in September 2024.
Our goal is to include a diverse group of community members, including affected individuals, parents, caregivers, and other CMD stakeholders. You do not need to live in the United States to participate.
Want to learn more about Cure CMD's Advocacy Advisory Council, and whether joining is right for you? Register to attend one of our informational sessions on any of following dates:
Have questions? Please complete our advocacy interest form.