The Opsoclonus Myoclonus Support Network recognizes the immediate need of Opsoclonus Myoclonus patients and their families to network with others affected by the syndrome, to have access to comprehensive information relating to the syndrome, and to be informed of the latest research. The Opsoclonus Myoclonus Support Network further recognizes the immediate need to have medical professionals better informed about the syndrome, its symptoms, history, etiology, and treatments. The Opsoclonus Myoclonus Support Network believes the syndrome's causes are discernible, and therefore advocates and supports research investigating the syndrome's neuro-biological and biochemical basis. The organization has been founded and holds 501-C3 not-for-profit status.

The Opsoclonus Myoclonus Support Network Home Page is therefore designed to assist opsoclonus myoclonus patients and their families network with others also affected by the opsoclonus myoclonus syndrome and to serve as a resource center. Community members wishing to have their names posted should contact The Opsoclonus Myoclonus Support Network. Any person affected by the syndrome is considered a community member.

Community Members
Current Events
Literature
Our Experiences
Past Research

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Physician Referrals

The following physicians have interest and experience in treating opsoclonus myoclonus. The doctors are available for contact by physicians or through physician referral only.

Dr. Wendy Mitchell Children's Hospital, Los Angeles Department of Neurology 4650 West Sunset Blvd. Los Angeles, Calif. 90027 (323) 669-2471 Voice wmitchell@chla.usc.edu

Dr. Michael Noetzel St. Louis Children's Hospital 1 Children's Place Room 12E-25 St. Louis, MO 63110 (314) 454-6120

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Current Research

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Dr. Anne Connolly is seeking untreated sera from patients with opsoclonus-myoclonus syndrome, with or without associated neuroblastoma, for studies aimed at understanding the immune mechanisms of this disorder. If you are interested in participating in this study, please have your physician contact Dr.Connolly. The required paperwork, release forms, and protocol are available through your physician only. Please address inquiries to:

Dr. Anne Connolly
Washington University School of Medicine
Neuromuscular Clinical Laboratory
660 S. Euclid - Box 8111
St. Louis, MO 63110
(314) 362-6981 Voice

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Robert B. Darnell, M.D., Ph.D., is studying patients with paraneoplastic neurologic disorders, including those with opsoclonus myoclonus syndrome. One study is aimed at furthering the understanding of the cause of these disorders; a second is is aimed at developing treatment protocols based upon the laboratory studies. Further information may be obtained through the Laboratory of Molecular Neuro-Oncology at Rockelfeller University, or contact:

Robert B. Darnell, M.D., Ph.D., Principal Investigator
Head, Laboratory of Molecular Neuro-Oncology
The Rockefeller University
1230 York Avenue
New York, NY 10021-6399
(212) 327-7460 Voice
http://clinfo.rockefeller.edu/social/paraneo.html

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Other Resources

HealthGate Free Medline
HealthWorld Medline Search
Infotrieve Free Medline
ExPASy Molecular Biology Server
Med Help International
National Organization for Rare Disorders
The Neuroblastoma Children's Society

The Dancing Eye Syndrome Support Trust, United Kingdom

OMS Families E-mail Group This e-mail group allows mass communicating through one e-mail address. You can sign up to receive and reply to posts by contacting Lisa Korenko

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Updated February 17, 2002

Edited by Sandra Greenberg

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