Dystonia Medical Research Foundation

The Dystonia Medical Research Foundation (DMRF) is a 501(c)3 non-profit organization dedicated to serving all people with dystonia and their families. Founded in 1976, the DMRF has evolved from a small family-based foundation into a dynamic membership-driven organization led by a Board of Directors and a network of volunteers with personal connections to dystonia[2][3].

Mission

The DMRF's mission is to advance research for more effective treatments and, ultimately, a cure for dystonia, while promoting awareness and education and supporting the needs and well-being of affected individuals and families[3]. Dystonia is a neurological condition characterized by involuntary sustained muscle spasms, which may affect various parts of the body and cause abnormal movements and postures[3][4].

Activities

The DMRF supports research through a variety of mechanisms:

• Grant and Fellowship Funding: The DMRF provides grants and fellowships to scientists worldwide to support preliminary research work necessary for pursuing larger grants from agencies like the National Institutes of Health (NIH). The foundation also funds riskier, cutting-edge investigations that may not be supported by other means[1].
• Research Contracts: The DMRF partners with investigators through research contracts to address specific questions or problems, such as creating cell and animal models or identifying potential drug targets[1].
• Scientific Workshops and Meetings: The DMRF hosts scientific meetings, including the International Dystonia Symposia, to facilitate the exchange of ideas, encourage collaborations, and attract new specialists to the field[1].
• Dystonia Coalition: The DMRF participates in the Dystonia Coalition, an international research collaboration focused on improving the diagnosis and treatment of dystonia, supported by a grant from the Office of Rare Disease Research and the NIH[1].
• Brain Bank Collective: The DMRF collaborates with other organizations in the Dystonia Brain Bank Collective to promote brain donation for dystonia research[1].

Programs

• Clinical Fellowship Program: The DMRF offers one-year fellowships to support clinical training of neurologists specializing in dystonia and other movement disorders[1].
• Support for Young Investigators: The organization fosters the careers of young investigators by providing research opportunities and interactions with established experts[1].

Publishing and Education

In 2021, the DMRF launched a new open-access journal in collaboration with Frontiers, dedicated to advancing research and understanding of dystonia[5]. The foundation also distributes educational materials and conducts symposia on dystonia[3].

Recognition

The DMRF has high ratings from Charity Navigator and Guidestar, indicating efficient management and use of resources[2]. Since its founding, the DMRF has grown to serve over 50,000 members globally[5].

[1] https://dystonia-foundation.org/research/research-101/ [2] https://dystonia-foundation.org/about-us/ [3] https://rarediseases.org/organizations/dystonia-medical-research-foundation/ [4] https://en.wikipedia.org/wiki/Dystonia [5] https://www.frontiersin.org/news/2021/03/16/dystonia-medical-research-foundation-and-frontiers-launch-new-open-access-journal