Gratitude for Our Dystonia Advocates

Many thanks to the nearly 100 advocates who traveled to Washington, DC this week to make sure dystonia remains a priority to our legislators. Words cannot express the gratitude we have for all of you – for sharing your stories, navigating the maze-like halls of the Congressional office buildings, and making sure key Congressional staff persons know about dystonia and how they can help. The DMRF is proud to be a part of the Dystonia Advocacy Network, joining with the Benign Essential Blepharospasm Research Foundation, the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association, and ST/Dystonia in hosting this event, but just as importantly, working throughout the year to keep dystonia on the minds of our Congressional leaders.

Congratulations to our Douglas Kramer Advocacy Award recipients, pictured below. From left to right, we applaud Melissa Phelps, Nicole Dean, and Allison London.. We look forward to working with these dedicated, young advocates in continuing to push the dystonia legislative agenda forward.

A special thank you to all of our advocates for your work these past few days. Great job, everyone!

Advocacy Works!

The DMRF has long felt that advocacy is important as a means to secure funding for critical dystonia research efforts. For over 20 years the DMRF has had a formal advocacy program to make sure that dystonia is on the radar for research support. There have been a number of exciting research breakthroughs in the past year: some having received early funding from the DMRF but most having received critical funding from the National Institutes of Health. Advocacy is an important program for dystonia--not just the DMRF-- but for the entire community. Through the Dystonia Advocacy Network (DAN) we come together to work on behalf of those affected by all forms of dystonia to make sure that our legislators are aware of what dystonia is and how they can help and together we push for more important funding for dystonia research. The DMRF is a proud member of the DAN and this collaborative effort.

The DAN has worked so hard these past few years to make sure that dystonia is included on the Department of Defense’s Peer Reviewed Medical Research Program.  Congratulations and many thanks to the DAN advocates who worked this past year on this important program. We’ve learned that the program is funding Nutan Sharma, MD, PhD for her work, “Dopamine Dysfunction in DYT1 Dystonia.” We are grateful to Jenelle Dorner and Peter Cohen for their service as consumer reviewers for the grant reviews this year.

This is another example that dystonia advocacy is effective—advocacy works! We hope you will all consider joining us this year for Dystonia Advocacy Day on April 30 - May 1 in Washington, DC to help us continue to this good work. For more information on Advocacy Day, contact us at dystonia@dystonia-foundation.org or 312-755-0198.