Take Action to Educate Elected Officials about Dystonia

dystonia legislative advocacyThe Dystonia Advocacy Network (DAN) needs your help to raise awareness of dystonia with US elected officials and support the need for more dystonia research. Please consider becoming a dystonia advocate and joining with others across the country in making a difference. Sign up with DAN here.

Being a dystonia advocate is easy, empowering, and can be done from the comfort of your home.  You can make a big difference in helping others with dystonia by becoming a dystonia advocate. Join us!


Advocacy Victories

Below are just a few of the DAN’s accomplishments, made possible by volunteer advocates–like you!

  • Congressional Briefing on Dystonia
    The first-ever Congressional Briefing on dystonia was held to improve dystonia awareness among US Representatives, Senators, and staffers.
  • Protected Access to Deep Brain Stimulation
    The DAN prevented regulation proposed by the Centers for Medicare & Medicaid Services to limit deep brain stimulation access to volunteers enrolled in clinical studies. This would have prevented countless patients from having access to potentially life-changing treatment.
  • DOD Began to Support Dystonia Research
    DAN advocates convinced legislators to add dystonia to the list of conditions eligible for study through the Department of Defense Peer-Reviewed Medical Research Program in the FY 2010 Defense Appropriations Bill. Advocates have successfully kept dystonia in the program every year since, resulting in over $20 million of dollars in additional funding awarded to dystonia investigators.
  • Increased Funding for NIH
    Each year dystonia advocates encourage Congress to increase funding for the National Institutes of Health (NIH) and support expansion of the dystonia research portfolio. This sustained outreach has helped funding for dystonia research at NIH reach $14 million annually.
  • Safeguards for New Biologic Therapies
    Dystonia advocates successfully urged legislators to establish an approval process for follow-on biologic products at the Food & Drug Administration with significant patient safety provisions. Botulinum neurotoxin is a biologic and a mainstay of treatment for many with dystonia.

The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.