Multiple System Atrophy News - November 2002

[Guest guest]

_____________________________________________________

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

______________________________________________________

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! "

______________________________________________________

2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Researchers Meet to Test MSA Rating Scale

Posted with permission from 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,

Reich from s 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. "

______________________________________________________

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, land 20892-4754

Toll Free: 1-

TTY: (local),1- (toll free)

Fax:

Electronic Mail:prpl@...

Full details of this trial can be found at:

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

______________________________________________________

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.

--------------------------------

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.

--------------------------------

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 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;

- ing 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.

______________________________________________________

To subscribe to the MSA Online Support Group

Please visit http://groups.yahoo.com/group/shydrager

To view past issues of Multiple System Atrophy News please go to:

http://americanautonomicsociety.org and click on

" Patient Resources " then on " Multiple System Atrophy News "

Did you know? Much of the research news about MSA comes from

leads from you, our readers. Please, if you know of any research

studies accepting MSA patients kindly share this information by

contacting the MSA News editor at pbower@...

______________________________________________________

[Guest guest]

_____________________________________________________

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

______________________________________________________

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! "

______________________________________________________

2. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Researchers Meet to Test MSA Rating Scale

Posted with permission from 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,

Reich from s 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. "

______________________________________________________

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, land 20892-4754

Toll Free: 1-

TTY: (local),1- (toll free)

Fax:

Electronic Mail:prpl@...

Full details of this trial can be found at:

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

______________________________________________________

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.

--------------------------------

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.

--------------------------------

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 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;

- ing 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.

______________________________________________________

To subscribe to the MSA Online Support Group

Please visit http://groups.yahoo.com/group/shydrager

To view past issues of Multiple System Atrophy News please go to:

http://americanautonomicsociety.org and click on

" Patient Resources " then on " Multiple System Atrophy News "

Did you know? Much of the research news about MSA comes from

leads from you, our readers. Please, if you know of any research

studies accepting MSA patients kindly share this information by

contacting the MSA News editor at pbower@...

______________________________________________________

[Guest guest]

Dear Pam,

Thank you for the information I have received about MSA through the

group. My mother, Dot Ervin, died on August 1 at age 80 of respiratory

failure, aspiration pneumonia, Shy Drager.

Now I am dealing with my sister's fight with breast cancer. It's always

something!

Thank you.

Kelli Holston

[Guest guest]

Dear Pam,

Thank you for the information I have received about MSA through the

group. My mother, Dot Ervin, died on August 1 at age 80 of respiratory

failure, aspiration pneumonia, Shy Drager.

Now I am dealing with my sister's fight with breast cancer. It's always

something!

Thank you.

Kelli Holston