Shy-Drager/MSA Support Group


 

 

   Multiple System Atrophy News

 

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August 2002

Table of Contents
1. SUPPORT GROUP EVENTS
    a. SDS/MSA Regional Conference: Chicago IL - September 13 - 15, 2002 >>
 

2. MULTIPLE SYSTEM ATROPHY IN THE MEDIA
    a. "About Health" TV Interview on MSA - Rob & Carol Langer Share Their Story >>
    b. MSA Video Documentary Needs Your Photo Submissions - Deadline August 31, 2002 >>

3. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS
    a. Orthostatic Hypotension Drug Study >>

4. ODDS AND ENDS
    a. Sarah Matheson Trust for Multiple System Atrophy Unveils New Revamped Website >>
    ______________________________________________________________________

1. SUPPORT GROUP EVENTS

a. SDS/MSA Regional Conference: Chicago IL - September 13 - 15, 2002
The regional conference for Shy-Drager Syndrome/Multiple System Atrophy patients, caregivers, family and friends has now been set for the weekend of September 13th - 15th.

Arrangements are in process for the meeting to be held at the Chicago O'Hare Airport Hilton Hotel. The toll free number there for room reservations is: 800-445-8667 Fax: 773-601-2873

The physicians that have committed to attend the meeting so far are: Dr. Janice Gilden of Chicago, Dr. Tom Chelimsky of Cleveland and Dr. David Robertson of Vanderbilt

The meeting schedule will be the same as those planned in the past:

Friday Sep 13th - evening social hour and get acquainted time

Saturday Sep 14th - Breakfast at 8:00, Meeting starting at 9:00 with physician presentations, and continuing through the day with breakout sessions for the patients, caregivers and family members. Meeting to finish around 4:00pm.

Sunday Sep 15th - Breakfast at 9:00 followed by a short Support Group business meeting and time of overall sharing. Meeting to finish around noon.

The snacks at the social hour, breakfast on Saturday and Sunday, break time snacks and lunch on Saturday to be provided by the SDS/MSA Support Group. There will be no registration fee to attend but we ask that you do register to allow usto arrange for the food service.

All the information will be put up on the website http://www.shy-drager.com and on the e-mail list http://groups.yahoo.com/group/shydrager as soon as all the details have been filled in!

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 between 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 SDSMSA Support Group also sponsors the e-mail list, shydrager@yahoogroups.com with the assistance of Vanderbilt University Medical Center.

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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2. MULTIPLE SYSTEM ATROPHY IN THE MEDIA

a. "About Health" TV Interview on MSA - Rob & Carol Langer Share Their Story

In May of 2002, Rob and Carol Langer of Lexington, MA and Rob's neurologist, Dr. Roy Freeman from Boston's Beth Israel Deaconess Hospital sat down with Jeanne Blake for this candid interview about Multiple System Atrophy.

This show was aired on the "About Health with Jeanne Blake" TV series.

Read the introductory information here: http://www.abouthealth.com/ahtv_details.cfm?Topic_Title=36

Read the full interview transcript here: http://www.abouthealth.com/ahtv_related_material.cfm?Transcript_ID=10

NEXT MONTH: Stay tuned as Jeanne Blake continues her discussion with MSA patient Tony Swartz-Lloyd.

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b. MSA Video Documentary Needs Your Input - Deadline August 31, 2002

ATTENTION: People with MSA and Caregivers

RE: PHOTOS and WRITINGS of People with MSA for MSA VIDEO DOCUMENTARY

Hello-

I am writing on behalf of Rainlight Films to let you know about a video documentary we are producing about Multiple System Atrophy (MSA) -- and to ask your help in creating A MONTAGE SEQUENCE featuring the FACES and COMMENTS OF many PEOPLE WITH MSA.

Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski and Deb Dohm. Jim is a documentary filmmaker and has produced several programs shown on public television. We both became aware of the issues of MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996.

As you know, having a relatively unknown disorder is an alienating condition -- few people have ever heard of it, there are no specific treatments or medications, research is scanty and a cure seems distant. In the film we want to document the human element: the emotional demands on MSA sufferers, their families, and caregivers, and the challenge of trying to cope. Included also will be information on the medical aspects of the disease.

I am writing to tell you about the film, and secondly because we would like to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about people who have MSA.

Therefore, if you are willing to VOLUNTEER and share your knowledge and experience (Deadline: August 31, 2002), we are seeking

1) your STILL PHOTOGRAPH (or home video) and

2) a BRIEF SYNOPSIS of your experience with the disease, including what TOOLS and METHODS of coping and caregiving have served you most effectively --

We would be very interested in hearing what your biggest challenge or learning experience has been; the one most important thing you would want to say to someone who has been newly diagnosed with MSA; and general advice you would offer to people with MSA and to their caregivers.

The film will be shown on public and cable television and worldwide on the Internet. Our purpose in making the film is so people newly diagnosed will not feel so alone and so those that have had MSA longer will know their story is being told. And, to increase public awareness. The more people that know about MSA the sooner a cure can be found. Research funding unfortunately is dependent upon broad public recognition.

We are beginning to edit the film and plan to complete it by the end of the year. PHOTOS and WRITINGS need to be in to us by AUGUST 31, 2002 to be considered. Let me reiterate that the written piece can be short, as long as your most important feelings, advice, and comments are emphasized.

We will return all photographs and videos; or you can email digital photos, if you like.

We appreciate your help by letting your stories and faces be known! Thank you.

Sincerely,

Deb Dohm and Jim Likowski
Rainlight Films
P.O. Box 410
Coloma, CA 95613
(530) 626-5938
Email: mulesear@earthlink.net

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3. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Orthostatic Hypotension Drug Study

Submitted by Lysa Crawford NDRFmc@aol.com
NDRF Support Group Leader Northern Ohio

Boston University Department of Neurology is seeking patients with Orthostatic Hypotension. More specifically, Dr. Novak has stated that the clinical study would focus on the effect of Midodrine (patients that are taking/have taken Midodrine or have not taken Midodrine).

If any of you know of patients that are willing to consider participation, please, contact Dr. Novak at 617-638-8590 or email him at Peter.Novak@bmc.org

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4. ODDS AND ENDS

a. Sarah Matheson Trust for Multiple System Atrophy Unveils New Revamped Website

Congratulations to everyone involved. The new website is a wonderful resource for MSA families around the world.

Check it out at: http://www.msaweb.co.uk

 

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To subscribe to the MSA Online Support Group

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

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