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July 23, 2004
Dealing with dystonia
Ashkenazi Jews should know about genetic disorder.
CONNIE ZALMANOWITZ SPECIAL TO THE JEWISH BULLETIN
Dystonia Awareness Week was supported by hundreds of support groups
across Canada and the United States, June 5-12. In an effort to
educate the public, physicians and government about dystonia and
its often devastating impact on patients and their families, groups
held Walk and Wheel events, set up displays in hospitals, universities
and bookstores and shared their personal stories.
Dystonia is a neurological movement disorder affecting many or single
muscle groups in the body. In its more generalized and often severe
form, it strikes in childhood, but can also affect men and women
in adulthood. It causes muscles to contract involuntarily, creating
abnormal movements, postures and pain. There are treatments –
designed to help the symptoms of spasms, pain and disturbed postures
and functions – but no cure.
Dystonia affects more than 300,000 people in North America –
the most severe form of the disorder is often genetic, with a much
higher incidence among Ashkenazi Jews. I learned about dystonia
almost 10 years ago.
In 1995, my son, Laurie, was playing soccer and one of my friends
noticed that he was running on his toes. Laurie couldn't lay his
foot squarely on the ground; his toes curled and his right foot
turned in. He was diagnosed with dystonia and, over the next two
years, he lost muscle control in his right leg, right hand and his
left leg. By age 11, he was using a wheelchair. Now 18, Laurie attends
Grade 12 at a regular high school and has established a strong presence
in the world of wheelchair athletics including tennis, sit skiing
and basketball. He has adjusted to a different life and so have
we, with the help of the Dystonia Medical Research Foundation (DMRF).
Founded in 1976 by Vancouverites Frances and Samuel Belzberg after
their daughter, Cheri, was diagnosed with dystonia, the DMRF moved
its office from Vancouver to Chicago in 1992. It has grown to a
member organization of 30,000 with a small staff and a scientific
advisory board. It has a broad network of support groups and provides
families with information on physicians and treatment. Each year,
the foundation funds almost one million dollars in research grants
in pursuit of better treatments and a cure.
In 2002, the DMRF once again established a permanent Canadian office
– on King Street in Toronto. Having a formal Canadian presence
means improved access to Canadian corporate and governmental agencies
in pursuit of research funds, while still maintaining close ties
with the American office and their many resources.
For more information about dystonia and Dystonia Medical Research
Foundation Canada, contact #106-8 King St. East, Toronto, Ont.,
M5C 1B5; phone 416-488-6974 or toll free 800-361-8061; or e-mail
[email protected].
Connie Zalmanowitz is national awareness co-ordinator
of the Dystonia Medical Research Foundation Canada. She is based
in Edmonton, Alta.
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