Dystonia Medical Research Foundation Canada

The Exceptional Parent, December 1999 | Go to article overview

Dystonia Medical Research Foundation Canada


Since its founding in 1976, the Dystonia Medical Research Foundation has been a family organization. Samuel and Frances Belzberg started the foundation when their teenage daughter was diagnosed with dystonia, a neurological movement disorder characterized by involuntary muscle spasms. Dystonia is the third most common movement disorder, after Parkinson's and tremor, and is six times more common than muscular dystrophy. Twenty-three years ago, very little was known about the disorder from either a medical or public standpoint.

The Dystonia Foundation has since grown from a small, family-based organization to a national and international membership-organization of nearly 25,000 members. The Foundation is dedicated to serving all people with dystonia. The Dystonia Medical Research Foundation is governed by a volunteer Board of Directors led by President Rosalie Lewis. Mahlon R. Delong, MD, scientific advisor, heads the foundation's scientific advisory board, which comprises both clinicians and researchers.

The Foundation has a broad network of over 200 local chapters and support groups, Regional Leaders, and area contacts throughout North America. The Foundation can provide physician referral lists, as well as insurance and benefit regulations information.

Seven Regional Coordinators and a Canadian Representative work in cooperation with local chapter- and support-group leaders. Within the Regional Structure there are chairpersons in the areas of Awareness, Children's Advocacy, Development, Extension, Internet, Leadership, Medical Education, and Symposiums. The President and Board of Directors, the Scientific Advisory Board, the subcommittees, the Regional Leaders, the Executive Director, and the headquarters staff all interact on a first-name basis. Although it may seem a small and inconsequential gesture, calling a person by his/her first name infers a familiarity and a comfort that, in the case of the Dystonia Foundation, speaks to a unique and highly productive professional relationship. One of the Foundation's greatest strengths is the capacity of cooperation among its members. There is a sense of kinship and respect among those involved, whether a person leads a team of scientists, a board meeting, or a letter-writing campaign. Those involved with the Foundation are dedicated to helping all people living with dystonia and their families, and in so doing are dedicated to helping each other.

Everyone involved with the Dystonia Foundation is working for the same purpose--a cure. The mission of the Dystonia Foundation is to promote awareness and education; to support the needs and well being of individuals and families affected by dystonia; and to advance research for more effective treatments and ultimately a cure for dystonia. The Foundation has funded 335 research grants to date, totaling over $15 million. Advancing research is a foremost priority. The Menkes/Markham Fellowship, for example, is established for the year 2000 and the Dr. Stanley Fahn Fellowship will begin in 2001. The New Millennium Award Program for Young Dystonia Investigators is intended to generate interest in dystonia research among medical and graduate students.

In order to promote awareness, the Foundation offers over 40 publications and videos as well as a quarterly newsletter.

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