Shy-Drager/MSA Support Group


 

 

   Multiple System Atrophy News

 

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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 >>

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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 877-865-5322
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@shy-drager.com

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. David Robertson 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 866-737-4999 or via e-mail at Don.Summers@shy-drager.com The SDS/MSA Support Group also sponsors the e-mail list, shydrager@yahoogroups.com . Your financial assistance is always needed and greatly appreciated! Contributions may be mailed to: The SDS/MSA Support Group 2004 Howard Lane Austin TX 78728 All contributions will be acknowledged and are tax deductible.

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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

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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

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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

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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@yahoogroups.com

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To subscribe to the MSA Online Support Group

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

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