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Neuromuscular Diseases, Neurological Resources


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Amyotrophic lateral sclerosis:"Amyotrophic lateral sclerosis: the term applied to the sporadic and most common form of the disease. Includes a number of overlapping syndromes such as pseudobulbar palsy, progressive bulbar palsy, progressive muscular atrophy and primary lateral sclerosis."
http://www.5mcc.com/5MCC/SUMMARY/0046.html

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American Association of Spinal Cord Injury Nurses:The American Association of Spinal Cord Nurses (AASCIN) is dedicated to promoting quality care for individuals with Spinal Cord Impairment(SCI). This is achieved by advancing nursing practice through education, research, advocacy, health care policy, and collaboration with consumers and health care delivery systems.
American Association of Spinal Cord Injury Nurses
75-20 Astoria Blvd. Jackson Heights, NY 11370
Phone (718) 803-3782 Fax (718) 803-0414
E-mail aascin@unitedspinal.org
http://www.aascin.org/

Category: National Nursing Associations, Nurse Organizations

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Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF):"The Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF) was founded in 1995 as a nonprofit 501(c)3 by Louis Bachmann(1916-2000) and Bonnie Strauss. The BSDPF supports patients, family members, researchers, clinicians and volunteers working in partnership to find better medical treatments and a cure for dystonia and Parkinson's disease. Learn more about our goals."
The Bachmann-Strauss Dystonia and Parkinson Foundation
The Mount Sinai Medical Center
One Gustave L. Levy Place
Box 1490
New York, NY 10029
tel: (212) 241-5614
fax: (212) 987-0662
e-mail:Bachmann.Strauss@mssm.edu
http://www.dystonia-parkinsons.org/

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Care4Dystonia, Inc.:"Beka Serdans, RN, MSN carries multiple "hats - that of being a patient diagnosed with dystonia; that of being an active healthcare professional and strong patient advocate. She has developed the innate ability to see all sides of dystonia - creating Care4Dystonia, Inc. in 2000 as an avenue to help publicize dystonia to the media. Beka appeared on NBCs Dateline in 1998 with Dr. Mitchell Brin, MD in a story covering the use of Botox for dystonia. Since then she has appeared in multiple media venues , more often writing about her own experiences and battles with the disease in the 2 popular books I'M Moving Two and I'm Moving On...Are U??. Care4Dystonia, Inc. is a nationwide community-based voluntary health organization ( 501c3 nonprofit ).
Care4Dystonia, Inc. c/o Serdans
440 East 78th Street
New York, NY 10021 USA
http://www.care4dystonia.org/

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DmdOptions:"The goal of this Web site is to share information with people interested in Duchenne muscular dystrophy. The emphasis is on facilitating informed CHOICES regarding life-style options, treatment options and their attending issues. While doing research for this site, it became apparent that most of the research on aggressive treatment options is not from American researchers. Much of the medical literature referenced here is not even available in English. This puts people with Dmd at a great disadvantage, especially those of us who do not live near the resources of a major medical institution. In other words, a family doctor in a small town does not have convenient access to the latest information on mechanical ventilation, cardiac therapies, steroids, etc."
Jim Gassen, Editor in Chief
137 Adams Drive
Addison, Illinois 60101
630-458-9450
630-589-0630 Fax
JimGassen@comcast.net
http://www.dmdoptions.com

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Motor Neuron Disease (MND):"Motor Neuron Disease or MND is a group of related diseases of the central nervous system, distinguished primarily by initial symptoms. Amyotrophic lateral sclerosis or ALS is by far the most frequent form (accounting for around 80% of all cases) ALS is also known as Lou Gehrig's disease, named after the famous Yankee baseball player."
http://home.intekom.com/amh/mnd.htm

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Neuromuscular Diseases:"Patients and lay persons looking for guidance among the target sources of this collection of links are strongly advised to review the information retrieved with their professional health care provider."
http://www.mic.ki.se/Diseases/c10.668.html

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Send comments and mail to Andrew Lopez, RN

Created on August 26, 1999

Last updated by Andrew Lopez, RN on December 1, 2017


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