MDA is dedicated to doing everything in our power to advocate for policies and programs that help save and improve the lives of kids and adults living with neuromuscular disease. Together, we ensure that our collective voice is heard.
Together, we are stronger. That is why we are asking you to join us in advocating for policies that advance biomedical research, ensure that safe and effective treatments are developed and delivered as quickly as possible, improve access to care and services, and maximize opportunities for independence.
Whether you are living with a muscle debilitating disease, or love someone who is. Whether you are a researcher, a health care provider, a teacher, or a community leader. We need your help. MDA advocates are actively engaged in every state across the nation, and in almost every U.S. Congressional district. With your help, we will continue to make a positive impact.
Please take a moment to explore MDA’s advocacy pages to learn more about policies and issues that impact our community, and ways you can get involved. Every MDA advocate is essential to progress, and everyone is welcome. We hope that you will join us in making a difference today.
As policy makers are considering various options to modify or replace the Affordable Care Act (ACA), MDA is working to ensure that individuals and families affected by chronic, serious and life-threatening diseases maintain health care access and coverage.
Many families whose children have spinal muscular atrophy (SMA) endure a long and difficult diagnostic odyssey. This may soon change, however, based on recommendations MDA recently made with a coalition of partners that SMA should be added to the list of conditions newborns are screened for at birth in the United States.
Voting is a privilege of living in a democratic society, and, for people with disabilities, it is one of the most important ways to promote leaders that best represent your values.
At the beginning of August, Biogen and IONIS Pharmaceuticals announced encouraging results from a late-stage clinical trial testing an experimental drug for infants with SMA type 1.
MDCC stands for the Muscular Dystrophy Coordinating Committee.
The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.