Shy-Drager/MSA Support Group

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: 1-303-321-3333
Fax: 1-303-329-5233

HOST: Dr. Lauren Seeberger, MD, Medical Director,
Colorado Neurological Institute Movement Disorders Center

SPEAKERS: Dr. David Robertson, 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@shy-drager.com
Web: http://www.shy-drager.com

Further information on the speakers:
Dr. Lauren 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-Robert Wood Johnson 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. David Robertson, 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. Robertson 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@shy-drager.com
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: (202) 234-0700
Fax: (202) 265-7972

Scheduled Speakers: Doctors: Blair Grubb, Phillip Low, David Goldstein, Julian Stewart, David Robertson, Cecil Coghlan, Roy Freeman, Ken Davis, Davis 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 George 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 651-267-0525 .

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), Johns Hopkins University (Baltimore, Maryland), 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.

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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