Multiple System Atrophy News - September 2002

[Guest guest]

______________________________________________________________________

Multiple System Atrophy News - September 2002

______________________________________________________________________

Table of Contents

1. SUPPORT GROUP EVENTS

a. SDS/MSA Regional Conference: Chicago IL - September 13 - 15,

2002

b. All California Ataxia Research Meeting: Fresno, CA - November

3, 2002

2. MULTIPLE SYSTEM ATROPHY IN THE MEDIA

a. " About Health " TV Interview on MSA featuring Tony Swartz-Lloyd

3. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Vanderbilt team nets $9.5 million to study autonomic nervous

system

4. ODDS AND ENDS

a. Local MSA Support Groups

______________________________________________________________________

1. SUPPORT GROUP EVENTS

a. SDS/MSA Regional Conference: Chicago IL - September 13 - 15, 2002

The Chicago SDS/MSA Support Group meeting arrangements have been

completed.

Location: The Chicago O'Hare Hilton Hotel

Dates: Friday, Sept.13 through Sunday Sept. 15th

Room rates: $90.00 plus tax per night

Accessibility: Walking (Tunnel) from Baggage claim or via Hilton

courtesy

shuttle outside baggage claim area.

Hotel reservation Instructions: Call

The group code is SDS/MSA. The code (including the " slash " ) must be

used

when you call!

Meal and Head Count Reservations:

I MUST have an accurate count of those attendees who will be joining

us for

any of the following meals and snacks!

Friday, Sept 13th: registration and Social Hour.

Saturday, Sept. 14th: Breakfast, Lunch And Break-Time Snacks.

Sunday, Sept. 15th: Breakfast

Please send me an e-mail with that information as soon

as possible. Don.Summers@...

The Support Group Must Pay For The Food Even If There is No One There

To Eat

It!!!!

For those without e-mail access, please call the support group toll

free

number and leave your information on the answering machine! (866-737-

4999)

Our Host for this meeting is Dr. Janice L. Gilden, M.D. of Finch

University

Health Sciences, The Chicago Medical School. Other physicians making

presentations will be:

Dr. Tom Chelimsky M.D of University hospitals of Cleveland and Case

Western

Reserve University, Cleveland, Ohio; Dr. on M.D of

Vanderbilt

University Medical Center, Nashville, Tennessee. Dr Gilden also

plans to

have a Movement Disorder Specialist from the Chicago area join us. I

will

post his name as soon as I receive it.

TENTATIVE CONFERENCE SCHEDULE

Friday, Sept. 13th

6:00 P.M. to 9:00 P.M. Registration, Social Hour And Get

Acquainted

time.

Saturday, Sept. 14th

7:30 - 8:30 A.M. Registration

7:45 - 8:45 A.M. Breakfast Buffet

9:00 A.M. Physician Presentations

10:30 - 11:00 A.M. Break and Snacks

11:00 A.M. Physician Presentations Continue

12:30 - 1:30 P.M. Lunch

1:30 P.M. Roundtable Discussion, Open Forum

With Physicians

2:45 - 3:15 P.M. Break and Snacks

3:15 - 4:30 P.M. Patient, Caregiver and Family Member Breakout

Sessions

Sunday Sept. 15th

8:30 - 9:30 A.M. Breakfast Buffet

9:30 - 12:00 Noon Support Group Business Meeting

And Wrap Up Session

Please plan to attend the business meeting on Sunday morning. There

are

some important things that need to be discussed there.

Please contact me if you have any questions or problems.

Don Summers, President

SDS/MSA Support Group

The SDS/MSA Support Group is a Non Profit corporation devoted to

reaching

and assisting the Patients, Caregivers, Family Members and Physicians

who

are dealing with Shy-Drager Syndrome (Also known as Multiple System

Atrophy). Our mission is to educate and support these people by

establishing a never-ending circle of information among all

involved. This

has become known as the " Circle of Hope " !

I can be reached at the toll free number or via e-mail at

Don.Summers@...

The SDS/MSA Support Group also sponsors the e-mail list,

shydrager .

Your financial assistance is always needed and greatly appreciated!

Contributions may be mailed to:

The SDS/MSA Support Group

2004 Lane

Austin TX 78728

All contributions will be acknowledged and are tax deductible.

b. All California Ataxia Research Meeting: Fresno, CA - November 3,

2002

Note: The National Ataxia Foundation http://www.ataxia.org

recognizes Multiple System Atrophy as a non-hereditary (sporadic)

ataxia.

Of particular interest at this meeting is a presentation on the drug

Histone Deacetylase (HDAC) which arrested neurodegeneration in a

fruit fly with Huntington's Disease.

For more information please see:

http://home.pacbell.net/fernande/meeting.htm

2. MULTIPLE SYSTEM ATROPHY IN THE MEDIA

a. " About Health " TV Interview on MSA featuring Tony Swartz-Lloyd

http://www.abouthealth.com/ahtv_details.cfm?Topic_Title=38

About Health with Jeanne Blake

Living with Multiple System Atrophy

A recent About Health program featured discussion about a disease

that until

recently received little attention. It's called Multiple System

Atrophy, or

MSA. The disease involves multiple systems within the nervous system

including those that involve movement, balance and coordination.

On this edition of About Health we continue our discussion of MSA

with Tony

Schwartz Lloyd. Tony was diagnosed two years ago. He is known to many

in

Boston as the former Senior Vice President of Communications and

Public

Affairs at Boston's Beth Israel Deaconess Hospital.

View the full transcript here:

http://www.abouthealth.com/ahtv_related_material.cfm?Transcript_ID=16

See the " About Health " website here:

http://www.abouthealth.com/healthtv.cfm

3. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Vanderbilt team nets $9.5 million to study autonomic nervous system

A group of VUMC investigators has received a $9.5 million, five-year

Program Project Grant (PPG) from the National Heart, Lung, and Blood

Institute to study disorders of the autonomic nervous system. The

grant is a renewal and expansion of a PPG that was first awarded in

1997.

View the full article here:

http://www.mc.Vanderbilt.Edu/reporter/index.html?ID=2182

4. ODDS & ENDS

a. Local MSA Support Groups

A list of MSA/Shy-Drager support group leaders and local contacts is

maintained at

http://www.shy-drager.com/Area%20Support%20Groups.htm

If you are interested in being a support group leader or local

contact send a note to

MSA-Contacts-owner

______________________________________________________________________

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://www.mc.vanderbilt.edu/gcrc/aas/indx.htm and click on

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

______________________________________________________