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.
Despite the progress in the quest for treatments and cures, individuals living with the life-threatening diseases that newly approved drugs treat are facing a new challenge — gaining access to the approved therapies. Today, some individuals and families are unable to access FDA approved therapies, which can significantly impact the health and life of the person denied access.
A delegation of dozens of MDA advocates from 23 states visited more than 100 congressional offices on Capitol Hill earlier this week to speak to their representatives about the importance of programs and policies that help accelerate the development of treatments and cures for individuals and families living with muscular dystrophy, ALS and related neuromuscular diseases.
In advance of MDA’s first ever Advocacy Conference, taking place April 23-25, we asked several advocates to unpack the idea of advocacy: what is it, why they became advocates and why it is necessary for others to follow their examples.
Being chosen to speak in front of the FDA and represent the SMA community makes me feel incredibly honored. Today’s SMA Patient-Focused Drug Development (PFDD) meeting with the FDA means we have a voice as patients living with rare muscle diseases.
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.
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.