Shy-Drager/MSA Support Group

Multiple System Atrophy News - November 2002

Table of Contents

1. SUPPORT GROUP NEWS
    a. Boston Meeting Audio Tapes Now Available

2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS
    a. Researchers Meet to Test MSA Rating Scale

3. CLINICAL TRIALS RECRUITING MSA PATIENTS
    a. Intravenous Immunoglobulin Therapy In Patients With Cerebellar Degeneration

4. ODDS AND ENDS
    a. MSA Researcher inducted to the American Academy of Arts and Sciences

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1. SUPPORT GROUP NEWS

a. Boston Meeting Audio Tapes Now Available

Audio tapes of the Boston SDS/MSA Support Group meeting held in May 2002 are now available.

The set consists of two audio cassettes with one hour of recording on each side. (Four hours total listening time). A contribution of at least $20.00 is requested to help cover the cost of production and delivery of these tapes.

To receive a set, please mail a check to:
The SDS/MSA Support Group
P.O. Box 279
Coupland, TX 78615

Don't forget to include your name and mailing address with your check.

Don Summers will mail your set of tapes as soon as possible after your donation is received. They will be sent First Class Mail to ensure quick delivery.

Don says, "I have listened to the whole set and am very pleased with the sound reproduction. The physician's presentations are very good as is the recording of the patients and caregivers questions and answers. I'm looking forward to sending these out. Hope to hear from you soon!"

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2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Researchers Meet to Test MSA Rating Scale
Posted with permission from Robert Gelber

"My wife signed up for Dr. Shults' study as soon as we heard about it, and we have spoken with him a number of times. We're lucky to have him so interested in the disease.

My wife was one of eight who were asked to go to the Parkinson's Institute in Sunnyvale 2 or 3 months ago to be examined by Dr. Shults and 6 other US and foreign neurologists who are involved in the study. It was a very formidable group, including Sid Gilman from Michigan, Stephen Reich from Johns Hopkins, Paola Sandroni from the Mayo Clinic, Fred Marshall from the University of Rochester in NY, Caroline Tanner from the Sunnyvale Parkinson's Institute, and Gregor Wenning from Austria. We were told that Dr. Wenning is the one who essentially created the MSA rating scale that was being tested during my wife's visit.

The purpose of seeing these 8 people with MSA was to test the draft of the MSA rating scale and to agree on the protocol they were all going to use in the study to determine whether or not the individuals they were going to study did or did not have MSA, and how to describe their symptoms, and the degree of development of each symptom. In essence they were trying to reach agreement on a common vocabulary, common standards, common procedures, common objectives, and common collection of data and information.

They examined each of the 8 separately, for about 2 hours each. All 7 of the doctors hovered over my wife at the same time as they put her through many of the tests which neurologists do for these diseases (i.e., look up, look down, follow my finger, touch my finger, touch your nose, stand up, walk, turn quickly, etc. etc.). They asked her many questions. They televised the whole thing. One interesting thing was that several of the doctors suggested that she didn't have any cerebellar involvement, and that what she had was more PSP than MSA. The others didn't agree.

Several days later, we had our regular every-two month visit with my wife's neurologist, Dr. Dan Geschwind at UCLA. We got Dr. Shults to call Dr. Geschwind and share the observations the examining doctors had on my wife. Dr. Geschwind has no doubt that my wife predominantly has MSA. Dr. Shults passed on a suggestion from one of the doctors that she should try Klonopin to ease her rigidity. Although she tried it and it didn't help, it was particularly considerate of Dr. Shults to pass all this information on to Dr. Geschwind."

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3. CLINICAL TRIALS RECRUITING MSA PATIENTS

a. Intravenous Immunoglobulin Therapy In Patients With Cerebellar Degeneration

The Efficacy of High-Dose Intravenous Immunoglobulin Therapy In Patients With Cerebellar Degeneration: A Double Blind, Placebo Controlled Trial

http://clinicalstudies.info.nih.gov/detail/A_2002-N-0185.html

Summary: This study will examine whether high-dose intravenous immunoglobulin (IVIG) is safe and effective for treating cerebellar ataxia-degeneration of the cerebellum, the part of the brain responsible for coordinating muscle movements and balance. The disease causes a slowly progressive impairment of speech and balance, with patients often developing slurred speech, tremor, clumsiness of the hands, and walking difficulties (ataxia). IVIG is derived from donated blood that has been purified, cleaned and processed into a form that can be infused. IVIG is an immune suppressant that is routinely used to treat other neurological conditions.

INCLUSION CRITERIA:

Adults over 18 with hereditary or sporadic cerebellar degeneration. Sporadic cerebellar degeneration may include the cerebellar predominant variant of Multiple System Atrophy (MSA-C).

Contacts:
Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793
Electronic Mail:prpl@mail.cc.nih.gov

Full details of this trial can be found at: http://clinicalstudies.info.nih.gov/detail/A_2002-N-0185.html

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4. ODDS & ENDS

a. MSA Researcher, inducted to the American Academy of Arts and Sciences

Dr. Sid Gilman, Ataxia & MSA Researcher, was inducted to the American Academy of Arts and Sciences in 2001.

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http://www.amacad.org/members/2001alpha.htm#G

Sid Gilman, II:5

Professor and Chair, Department of Neurology

University of Michigan

Director, Michigan Alzheimer's Disease Research Center. Biochemical changes in neurodegenerative diseases studied with positron emission tomography. Discovered the cerebral disorders resulting from open heart operations. Demonstrated generalized cerebral glucose hypermetabolism in Friedreich's ataxia, focal cerebral hypometabolism in chronic alcoholism, olivopontocerebellar atrophy and multiple system atrophy, and preservation of benzodiazepine receptors in these disorders.

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http://www.amacad.org/news/2001induct.htm

American Academy Inducted 2001 Fellows

October 13, 2001- On October 13th, the American Academy of Arts and Sciences welcomed new Fellows from across the nation and around the world. In an Induction ceremony held in Cambridge, Academy officers led by President Patricia Meyer Spacks (University of Virginia) greeted the new Fellows-a diverse class of scholars, scientists, public officials, artists, and business leaders who bring expertise in areas ranging from photography to the study of diabetes.

http://www.amacad.org/index.htm

Founded in 1780, the American Academy of Arts and Sciences is an international learned society composed of the world's leading scientists, scholars, artists, business people, and public leaders. With a current membership of 3,700 American Fellows and 600 Foreign Honorary Members, the Academy has four major goals:

- Promoting service and study through analysis of critical social and intellectual issues and the development of practical policy alternatives;

- Fostering public engagement and the exchange of ideas with meetings, conferences, and symposia bringing diverse perspectives to the examination of issues of common concern;

- Mentoring a new generation of scholars and thinkers through the newly established Visiting Scholars Program;

- Honoring excellence by electing to membership men and women in a broad range of disciplines and professions.

The Academy's main headquarters are in Cambridge, Massachusetts. With its geographically diverse membership, it has also established regional centers at the University of Chicago and at the University of California, Irvine, and conducts activities in this country and abroad.

If you are interested in being a support group leader or local contact send a note to MSA-Contacts-owner@yahoogroups.com