How will We Find a Cure?
Dystonia is a Movement Disorder
The DMRF believes the best service it can provide the dystonia community is to work every day toward improved therapies and a cure.
How will we get there?
Here are some of our key approaches:
The Medical & Scientific Advisory Council is made up of dystonia clinicians and scientists who are among the most knowledgeable in the world and whose work is shaping neurology, neuroscience, neurosurgery, and related fields.
The DMRF partners with investigators to answer specific questions about dystonia by working on specific problems. Research contracts have been used to fund new cell and animal models, pursue potential drug targets, study specific genes and proteins, and better understand neuronal pathways associated with dystonia.
The DMRF is partnering with biotech/pharmaceutical companies to identify and study new drug targets, which is a first step toward new medications.
The DMRF has formed alliances with industry partners intended to speed-up the development of brand new therapies. This effort also includes putting measures in place to support clinical trials when new approaches need to be tested.
The DMRF has funded the development of cell and animal models that allow dystonia investigators at multiple centers to pursue specific lines of research. The Brain Bank Collective oversees a private collection of donated brain tissue available exclusively to dystonia researchers.
The DMRF regularly announces dystonia studies in need of volunteers . The DMRF also empowers affected individuals and families to make their voices heard to Congress and advocate on the need to protects federal research funding and access to treatment.
The DMRF helps young investigators establish and pursue careers in dystonia. The DMRF also fosters clinicians by offering one-year fellowships to train neurologists in movement disorders with special focus on dystonia.
Scientific workshops and meetings stimulate the exchange of ideas, lead to collaborations, and attract new specialists to the field. The International Dystonia Symposia, hosted by the DMRF since 1975, are the definitive dystonia meetings.
The DMRF cannot cure dystonia alone. The patient community wins when like-minded organizations work together to connect investigators and support a worldwide cooperative effort.
The DMRF serves as an administrative center for several dystonia community projects including the Global Dystonia Registry, Dystonia Advocacy Network, and Dystonia Brain Collective. The DMRF also lends administrative support to the Dystonia Coalition.
As member of the Dystonia Advocacy Network, the DMRF actively supports the funding of dystonia research at the federal level at the National Institutes of Health and more recently through the Department of Defense.
Because every member of the DMRF Board of Directors is personally affected by dystonia, there is no other option but to keep working toward a cure. The work will be complete when no other person or family is ever again burdened by dystonia.