For 40 years, the DMRF has led cutting-edge dystonia research, stimulated public awareness, advocated for the needs of the community, and provided support and information to affected individuals and families. The DMRF is proud to have played an essential role in elevating the field of dystonia research to the forefront of movement disorders, and has supported the most significant recent scientific advancements—from groundbreaking genetic discoveries to identifying new drug targets.
Charity Navigator, the country's largest and most popular independent evaluator of charities, awarded the DMRF the prestigious 4-star rating for good governance, sound fiscal management, and commitment to accountability and transparency.
Since 1976, the DMRF has funded over 500 investigators totaling over $30 million in research projects alone. The DMRF has funded investigators whose work represents some of the most important progress in the field. In addition to funding research projects, the DMRF science program includes workshops, a clinical fellowship program, serving as an administrative center for the Dystonia Coalition (a collaborative effort supported through the National Institutes of Health), and additional programs focused on better understanding the disorder.
Science efforts are guided by experts of the highest caliber. Scientific Director Mahlon R. DeLong, MD of Emory University School of Medicine earned a 2014 Breakthrough Prize in Life Sciences. Chief Scientific Officer Jan Teller, MA, PhD was recently recognized as a Drug Information Association (DIA) Patient Advocate Fellow.
Education & Support:
A dystonia diagnosis is a jarring, life-altering event. When an individual is diagnosed, the effects ripple through the entire family. Access to accurate information and connection to other patients is as essential to living well as access to appropriate medical care. The DMRF provides a soft place to land: access to credible information on dystonia and treatments, research updates, and opportunities for support. Educational materials are reviewed by physicians and community education programs provide access to medical experts. Fifty support groups and a dozen internet forums provide a lifeline to local communities and special populations such as parents, young adults, and specific forms of the disorder.
As a member and administrative center of the Dystonia Advocacy Network, the DMRF provides a vehicle for patients and families to bring awareness of dystonia to federal leaders and policymakers. Dystonia advocates work year round on a designated legislative agenda and meet annually on Capitol Hill for meetings at Congressional offices.