The DMRF believes the best service it can provide the dystonia community is to work every day toward improved therapies and a cure. The DMRF aspires to serve as a leader in dystonia research, putting in as much time, effort, and resources as needed to get the results that make a difference in people’s lives.
Over 40+ years, the DMRF’s science activities have grown from a simple grants program in the first year of operations to a multi-layered, sophisticated science portfolio. Each part of the science portfolio has been assembled to stimulate and support not just DMRF-funded scientists but the entire field of dystonia research.
Each year, the DMRF publishes the Promise & Progress science report for members.
Highlights of the DMRF’s science program include:
The DMRF invites scientists from all over the world to apply for funding to support their research on dystonia. The DMRF provides relatively small grants to investigators that allow them to do the preliminary work necessary to be eligible for larger grants from agencies like the National Institutes of Health (NIH). In many cases, the DMRF is prepared to fund research that is not being supported through other means. The DMRF is often able to support riskier, more cutting-edge investigations that the NIH is less inclined to fund.
The DMRF doesn’t just wait for the research to come to us. Through research contracts, the Foundation partners with investigators to answer a specific question or work on a specific problem. The DMRF has used contracts to fund the creation of important cell and animal models, pursue potential new drug targets, collect data on specific proteins, and better understand specific neurons and pathways in the brain associated with dystonia. Because the DMRF has a full time Chief Scientific Advisor, the DMRF is able to forge and negotiate research contracts and reach out to potential partners.
The DMRF is passionate about bringing scientists and experts together from around the world to brainstorm, discuss, and debate issues in the field. 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, and proceedings from each meeting are published as seminal books.
The Dystonia Coalition is a groundbreaking research collaboration that brought together an international network of investigators, movement disorder centers, and patient organizations—all focused on improving diagnosis and treatment of dystonia. The overall goal is to advance the pace of clinical research for primary focal dystonias. This effort includes supporting clinical trials and funding research projects that have direct bearing on diagnosis, treatment, and patient quality of life. The Dystonia Coalition is funded by a $6.2 million, five-year grant from the Office of Rare Disease Research (ORDR) and the National Institutes of Health. The DMRF is proud to serve as an administrative center for the Dystonia Coalition.
The DMRF collaborates with other dystonia patient organizations in the Dystonia Brain Bank Collective to promote brain donation for dystonia research, and to facilitate brain collection, storage, and distribution of samples for research. A private collection of donated brain tissue from the dystonia community is established at the Harvard Brain Resource Center at McLean Hospital in Belmont, Massachusetts. The DMRF serves as the administrative center for the Brain Bank Collective.
Few things are more critical to living well with dystonia than a knowledgeable doctor who is trained in the diagnosis and treatment of movement disorders. The DMRF is fostering the next generation of dystonia leaders by offering one-year fellowships to support clinical training of neurologists in preparation for a clinical and/or research career in movement disorders with special focus on dystonia. The Clinical Fellowship Program has been made possible by grants from Merz Pharmaceuticals and The Allergan Foundation.
One of the goals of the DMRF Science Program is to help young investigators establish and pursue careers in dystonia. The DMRF creates numerous opportunities--through research funding and scientific workshops and meetings—for young investigators to interact with established dystonia experts who often become their role models and source of continuous inspiration.
Exploring opportunities for drug discovery and development is a critical part of the DMRF’s quest for improved therapies. The DMRF partners with biotechnology/pharmaceutical companies to explore and identify new drug targets, which is the first step in discovering and developing new medications. The goal is a whole new generation of dystonia therapies that interrupt, alleviate, or prevent symptoms at the cell level.