Multiple System Atrophy News - June 2002

[Guest guest]

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Multiple System Atrophy News - June 2002

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Table of Contents

1. SUPPORT GROUP EVENTS

a. MSA Conference: Denver CO - July 26 - 28, 2002

b. MSA Conference: Chicago IL - September 2002

c. NDRF Conference: Washington DC - July 18 - 20, 2002

2. MSA RESEARCH NEWS

a. MSA Research Study Announcement

b. MSA Research Study Questionnaire

c. MSA Mouse Model Discovered!

3. ODDS AND ENDS

a. MSA NEWS Now Published Online

b. North American Members Reach Out to Those in Australia and

Europe

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1. SUPPORT GROUP EVENTS

a. MSA CONFERENCE: SDS/MSA SUPPORT GROUP REGIONAL MEETING

DATES: July 26 - 28, 2002

CITY: Denver, CO

LOCATION: Double Tree Hotel

3203 Quebec Street,

Denver, CO 80207

Tel: 1-

Fax: 1-

HOST: Dr. Seeberger, MD, Medical Director,

Colorado Neurological Institute Movement Disorders Center

SPEAKERS: Dr. on, MD,

Director of Clinical Research Center

Vanderbilt University

and

Dr. Rajeev Kumar, MD

Director of the Functional Neurosurgery

Program

Colorado Neurological Institute Movement

Disorders

Center

For more information and to register:

CONTACT: Don Summers, President

Toll Free: 1-866-SDS-4999

Email: Don.Summers@...

Web: http://www.shy-drager.com

Further information on the speakers:

Dr. C Seeberger, MD - Medical Director, Colorado Neurological

Institute Movement Disorders Center; Director of the CNI Huntington's

Disease Center of Excellence; Director of the National Parkinson's

Foundation Center of Excellence at CNI.

A native of Mobile, Alabama, Dr. Seeberger earned her undergraduate

degree

from Vanderbilt University and received her medical degree from the

University of Alabama. She completed her residency in neurology at

Vanderbilt University School of Medicine and her fellowship training

in

movement disorders at UMDNJ- Wood Medical School in New

Jersey. She is Board Certified in neurology.

Dr. Seeberger is a member of the American Medical Association and the

American Academy of Neurology. She serves on the board of the Rocky

Mountain

Chapter of the Huntington's Disease Society of America, and is co-

director

of the Rocky Mountain MS Center Spasticity Clinic.

As part of a North American consortium of investigators collaborating

on

research and treatment of movement disorders, Dr. Seeberger is a

member of

the Huntington's Disease Study Group, the Dystonia Study Group, the

Parkinson's Study Group and the Tourette's Syndrome Study Group. She

has

written and lectured extensively on movement disorders and is

currently

involved in CNI research projects to develop treatments for

Parkinson's

Disease, Huntington's Disease, Dystonia and Tourette's Syndrome

~~~~~~~

Dr. on, Elton Yates Professor of Medicine, serves as

program

director for the General Clinical Research Center. He serves as

director of

Vanderbilt's Medical Science Training Program and Vanderbilt's Center

for

Space Physiology and Medicine. Dr. on is an accomplished

clinical

investigator with research interests in the following areas:

Autonomic Nervous System

Blood Pressure Regulation

Noradrenergic Neuronal Function

Catecholamines

Neurodegenerative Disease

~~~~~~~

Dr. Rajeev Kumar, MD is the Director of the Functional Neurosurgery

Program

at the Colorado Neurological Institute Movement Disorders Center. He

has

been the Director of the program since 1998. Dr. Kumar graduated from

the

University of Saskatchewan, MD with distinction in 1991. He did his

residency in internal medicine and neurology at the Mayo Clinic. Dr.

Kumar

completed a fellowship in movement disorders at the University of

Toronto in

1997. He has published extensively in this field and specifically on

the

treatment of Parkinson's Disease, tremor and dystonia with deep brain

stimulation.

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b. MSA CONFERENCE: SDS/MSA SUPPORT GROUP REGIONAL MEETING

DATES: September 2002 (exact dates to be determined)

CITY: Chicago, IL

LOCATION: (exact location to be determined)

HOST: Dr. Janice Gilden, MD

For more information and to register:

CONTACT: Don Summers, President

Toll Free: 1-866-SDS-4999

Email: Don.Summers@...

Web: http://www.shy-drager.com

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c. CONFERENCE: National Dysautonomia Research Foundation

Dates: July 18 - 20, 2002

Location: Washington, DC

NDRF is pleased to announce the second patient / caregiver conference

on

dysautonomias. This three day conference will be held in our nations

capital, giving all of us an opportunity to learn more, and help

educate our

nation's leaders on the importance of health care and continued

research in

this area of medicine.

The sessions will be held over three half day periods, and will be

given by

leading experts in autonomic research. All sessions will include

opportunities for questions and answers.

Conference fees include luncheon on July 18th, continental breakfast

and

dinner on July 19th, and continental breakfast on July 20th

Early registration is encouraged, as seating is limited.

Location: Omni Shoreham Hotel

2500 Calvert Street NW

(at Connecticut Ave.)

Washington, District of Columbia 20008

Phone:

Fax:

Scheduled Speakers: Doctors: Blair Grubb, Low,

Goldstein,

n , on, Cecil Coghlan, Roy Freeman, Ken

,

Levy, Suzette Levy

Topics: Orthostatic intolerance, Neurally Mediated Syncope, Multiple

System

Atrophy, Exercise, Neurotransmitters, Autonomic nervous system, pure

autonomic failure, chronic fatigue, open questions and answers, drug

therapy, caregiving, coping strategies, support groups

Guest Speaker: President Bush at the Presidential dinner

Friday July 19th

Conference fee: $150 per person

Please visit http://www.ndrf.org/Seminars.htm for more information or

to

register online or call .

NDRF Homepage: http://www.ndrf.org

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2. MSA RESEARCH NEWS

a. Multiple System Atrophy Research Study

May 20, 2002

The North American Multiple System Atrophy (MSA) Study Group is

working to develop a comprehensive research effort into MSA, and the

clinical part of the research will be carried out at seven medical

centers in the United States. These centers include the University

of California, San Diego (La Jolla, California), Parkinson's

Institute (Sunnyvale, California), Mayo Clinic (Rochester,

Minnesota), University of Michigan (Ann Arbor, Michigan), s

Hopkins University (Baltimore, land), University of Pennsylvania

(Philadelphia, Pennsylvania), and University of Rochester (Rochester,

New York).

A major part of this effort will be to evaluate 150 MSA patients with

two examinations each year for up to five years at one of the seven

clinical centers. Patients with MSA will also be asked to identify

two non-blood relatives (spouses or in-laws) who would be willing to

be evaluated once. MSA patients will also be asked to participate in

a telephone interview, which will try to identify factors, such as

diet or exposure to certain chemicals, that might cause MSA.

Our proposal to the National Institutes of Health for support has not

yet received funding. Reviewers of our proposed research questioned

whether 150 MSA subjects would be willing and able to be evaluated

two times each year. To respond to this concern our group would like

to identify MSA patients who would be willing to come to one of the

above centers two times each year for an evaluation. We realize

after a few years travel may become very difficult for some MSA

patients, and then we will try to obtain the needed information

through a telephone call. These evaluations will not replace the

ongoing care that the MSA patient is receiving from her/his

physician.

If you are interested in possibly participating in this study once it

has received funding, please complete the questionnaire, which is

pasted below, and mail (please do not use email) to

Cliff Shults M.D.

Department of Neurosciences 0662

Univ. of California San Diego - School of Medicine

9500 Gilman Drive

La Jolla, CA 92093-0662

The information that you provide will remain confidential. Dr. Shults

will try to call you within two weeks of receipt of the questionnaire

to answer questions regarding the planned study and clarify any

questions that he has regarding the information that you provided.

Sincerely,

Cliff Shults, M.D.

Professor of Neurosciences

University of California, San Diego

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b. MSA RESEARCH QUESTIONNAIRE

May 20, 2002

Questions for MSA patients interested in the study

" Pathogenesis and Diagnosis of Multiple System Atrophy " - #010906

Please complete and mail to:

Cliff Shults M.D.

Department of Neurosciences 0662

Univ. of California San Diego - School of Medicine

9500 Gilman Drive

La Jolla, CA 92093-0662

1. Name _____________________________________________

2. Address____________________________________________

___________________________________________________

3. Telephone number____________________________________

4. Date of birth_________________________________________

5. Gender_____________________________________________

6. Have you been diagnosed by a doctor to have multiple system

atrophy (MSA)?

YES_____ NO_____ If so, what year was the diagnosis made?

_________

7. Was the doctor a neurologist?

YES_____ NO_____

8. Would you be willing and able come to one of the participating

medical centers to be seen by an expert in multiple system atrophy

two times each year for up to five years? Reasonable travel expenses

would be covered. There would be no cost for the evaluation.

YES_____ NO_____

9. If so, at which site

San Diego, CA_____

Sunnyvale, CA_____

Rochester, MN_____

Ann Arbor, MI_____

Baltimore, MD_____

Philadelphia, PA_____

Rochester, NY_____

10. Do you think that your spouse and/or some of your in-laws would be

willing to come to come to one of these centers once for an

evaluation?

YES_____ NO_____

11. Do you think that you, your spouse and some of your in-laws would

be willing to participate in a telephone survey investigating

possible risk factors for MSA, by asking about work, hobbies, health,

life style and family medical history?

YES_____ NO_____

12. Would you be willing to travel by airplane to a medical center

for a detailed evaluation of your autonomic system, which is the part

of the nervous system that controls blood pressure, urinary function

and bowel function?

YES_____ NO_____

13. Would you be willing to give a blood sample to study your DNA for

a genetic cause of MSA?

YES_____ NO_____

14. Do you have slowness of movement? YES_____ NO_____

15. Do you have stiffness in your muscles? YES_____ NO_____

16. Do you have extra movements such as shaking, tremor or jerks?

YES_____ NO_____

17. Do you have faintness or do you pass out? YES_____ NO_____

18. Do you have problems with control of urination (your bladder ) ?

YES_____ NO_____

19. Do you have problems with coordination of your arms?

YES_____ NO_____

20. Would you be willing to have your doctor send your medical

records to Dr. Shults for review? YES_____ NO_____

21. If you are willing to allow Dr Shults to review your medical

record for research purposes, he will mail to you a " Release of

Medical Records " form, which will allow your doctor to send your

medical records related to MSA to Dr. Shults. Please indicate

whether you would be willing allow your physician to send your

medical records related to MSA to Dr. Shults.

YES_____ NO_____

22. Please list any other medical problems you have:

23. Please list your medications.

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c. MSA MOUSE MODEL DISCOVERED!

10-Jun-2002

http://unisci.com/stories/20022/0610025.htm

Mouse Model Developed For Widespread Neural Disease

In this month's issue of EMBO Reports, Philipp Kahle and colleagues

describe

how they genetically engineered a mouse to show pathological symptoms

similar to those of human patients suffering from the neural disease

Multiple System Atrophy (MSA). MSA is also known as Shy-Drager-

Syndrome.

The model could help researchers to develop and test efficient new

drugs

against this widespread disease.

More than 100,000 Europeans and 100,000 Americans suffer from MSA.

Affected individuals either show symptoms similar to those of patients

suffering from Parkinson's Disease or have a strong deterioration in

their

sense of balance. For this reason, the disease is often diagnosed

incorrectly.

Doctors know very little about the pathology of the disease. However,

one

characteristic is that some brain cells show abnormal changes.

Affected

mature oligodendrocytes, the cells that form the isolating outer layer

surrounding nerve fibers, produce a small protein called alpha-

synuclein.

They deposit this protein in the form of pathological structures

called

glial cytoplasmic inclusions.

Healthy mature oligodendrocytes do not produce this protein at all.

Kahle and colleagues implanted the human gene for the alpha-synuclein

protein into the mouse genome. As a result, the researchers found

insoluble

inclusion bodies of alpha-synuclein in the mouse's oligodendrocytes.

" In patients, the affected cells die as the individual ages. This is

something we could not yet observe in our mice, " says Philipp Kahle, a

researcher at the Ludwig Maximilian University, Munich, Germany. " But

we are

confident that in a next step we can produce mice that will also show

this

symptom. This will help us to understand more about the disease and

can help

researchers to develop and test drugs against multiple system

atrophy. "

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3. ODDS AND ENDS

a. MSA NEWS Now Published Online!

Dr. Italo Biaggioni has kindly added back issues of Multiple System

Atrophy

News to the American Autonomic Society Website.

See:

http://www.mc.vanderbilt.edu/gcrc/aas/

Click on " Patient Resources "

then on " Multiple System Atrophy News "

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b. North America Members Reach Out to Those in Australia and Europe

Two regular ONLINE CHAT SESSIONS are now held:

1. For North American and European Members (and others interested)

Sundays at 4PM Eastern (8PM UTC/GMT)

2. For North American and Australian Members (and others interested)

Wednesdays at 7:30 PM Eastern (10:30 PM UTC/GMT)

This is equivalent to Thursdays at 9:30 AM in Queensland

& New South Wales, Australia

The chat room is located here:

http://accesswave.ca/~pbower/msachat.htm

Please join in!

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To subscribe to the MSA Online Support Group

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

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[Guest guest]

Trudi, Sorry I missed seeing your note until now. I don't have any

knowledge about this particular symptom but I'm forwarding your note to the

shydrager/MSA group.

I don't know if this relates to his new symptom but do you know about

infections being the usual cause of a sudden decline? We talk about this

on the shydrager list all the time. I encourage you to subscribe and get

speedy answers to your questions from the experts living with the disorder

and their very capable caregivers.

See: http://groups.yahoo.com/group/shydrager

Take care,

Pam

RE: Multiple System Atrophy News - June 2002

> Hi Pam

>

> It's Trudi again. My father is getting progressively worse and today has

> complained of sore legs and feet. Is this normal? Have other sufferers

> experienced this? Can we do anything about it?

>

> Many thanks

>

> Trudi

>

[Guest guest]

Pam Bower wrote:

Trudi, Sorry I missed seeing your note until now. I don't have anyknowledge about this particular symptom but I'm forwarding your note to theshydrager/MSA group.I don't know if this relates to his new symptom but do you know aboutinfections being the usual cause of a sudden decline? We talk about thison the shydrager list all the time. I encourage you to subscribe and getspeedy answers to your questions from the experts living with the disorderand their very capable caregivers.See: http://groups.yahoo.com/group/shydragerTake care,Pam RE: Multiple System Atrophy News - June 2002> Hi Pam>> It's Trudi again. My father is getting progressively worse and today has> complained of sore legs and feet. Is this normal? Have other sufferers> experienced this? Can we do anything about it?>> Many thanks>> Trudi>my mom complains of her legs hurting all of the time and they say its just part of it. it has to do with the muscles drawing up. good luck

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