Thursday, January 24, 2013

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 or 312-755-0198.

Wednesday, January 9, 2013

Happy New Year

2012 was a year of many achievements: research advancements, the launch of the DMRF’s clinical fellowship program, success in our legislative efforts, and thousands reached through our education and support programs. As we look ahead to the New Year we are filled with hope for what it will bring our community. We are inspired to continue to aggressively push forward for more scientific breakthroughs and more awareness and recognition of dystonia. We will not rest until our mission is achieved, and we cannot do it alone. We are united in our shared goal of ending dystonia. Last year saw the DMRF family pull together to meet a challenge grant from an anonymous donor to raise an additional $110,000 for our critical research program--which led to a total of $210,000 when matched by the donor. Words cannot express how grateful we feel to our leaders, our donors, our advocates and everyone who has worked to support someone in the DMRF community this past year.

On behalf of the DMRF Board of Directors, staff and for myself, I wish everyone a happy, healthy 2013.  We look to shatter all expectations for scientific advancements, dystonia awareness, and support of those affected by dystonia and their families this coming year. Let’s get to it!