Dystonia is a neurological movement disorder that causes involuntary muscle contractions, which force the body into abnormal, and sometimes painful, movements or postures. Dystonia affects men, women and children of all ages and backgrounds and causes varying degrees of disability and pain, from mild to severe. It is the third most common movement disorder behind only Parkinson’s and Essential Tremor (estimates suggest that at least 300,000 – 500,000 people are afflicted in North America alone). There is presently no cure, but some treatment options exist and scientists around the world are actively pursuing research towards new therapies, and ultimately a cure.
Cure Dystonia Now is a public charitable organization that is run by volunteers and is working with researchers on cutting edge treatments and ultimately a cure for Dystonia. We are pleased to be working with several of the pre-eminent scientists in the field of Dystonia, who comprise our Medical and Scientific Advisory Council (MSAC). The MSAC conducts peer-review of research applications, sets the direction of research and makes recommendations to the Board for funding research. You can read about the research we have funded here
IRS Form 990
Form 990 is an annual reporting return that certain federally tax-exempt organizations must file with the Internal Revenue Service (IRS). It provides information on the filing organization’s mission, programs and finances.
Conflict of Interest Policy
The Medical and Scientific Advisory Council (MSAC) is comprised of pre-eminent scientists in the field of Dystonia. Members will conduct peer-review of research applications, set the directions of research and make recommendation to the Board for funding.
David Eidelberg, MD
The Feinstein Institute for Medical Research
North Shore-LIJ Medical Group
Harvard Medical School
Director, Co-President, Treasurer & Secretary
Dystonia patient registries
Patient registries help researchers better understand dystonia by collecting information directly from volunteers who are diagnosed. Individuals are encouraged to consider participating:
Global Dystonia Registry
The Global Dystonia Registry is part of the Dystonia Coalition, a cooperative project between medical researchers and dystonia patient advocacy groups, for which the DMRF serves as an administrative center.
Dystonia International Patient Registry (DiPR)
The DMRF is partnering with Tyler's Hope for a Dystonia Cure in support of this registry which focuses on DYT1 dystonia