The current and rapidly evolving federal policy environment has raised a number of questions from our community about the impact on those living with CMD. The Cure CMD Legislative Advocacy team, along with our advocacy partners, continue to actively monitor developments and will provide pertinent updates.
The National Institutes of Health (NIH) and research funded by the NIH has been a focus of many recently proposed changes. While the NIH, specifically the team at the Neuromuscular and Neurogenetic Disorders of Childhood Section - NINDS, has been critical to ongoing developments in CMD research for many years, Cure CMD and our partners fund research at a variety of institutions that will fortunately not be affected if these changes become permanent. We are grateful to our donors for their ongoing support of research.
Despite these turbulent times, Cure CMD’s mission “to advance research toward treatments for the congenital muscular dystrophies and empower those living with CMD through engagement and support of our community” remains unchanged. The Cure CMD Legislative Advocacy team continues to advocate for the CMD community and the issues that are important to all of us. Promoting the needs of those living with a rare disease like CMD is a non-partisan issue. Over the years, we have witnessed legislators on both sides of the aisle support and champion our work.
I encourage you to check out the resources on our advocacy webpage, including how to contact your Members of Congress. If you have questions or concerns, or would like to get more involved, please reach out using our advocacy interest form.
Your voice and your story matters!