Multiple System Atrophy News - August 2002

[Guest guest]

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Multiple System Atrophy News - August 2002

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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. Matheson Trust for Multiple System Atrophy Unveils New

Revamped Website

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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:

Fax:

The physicians that have committed to attend the meeting so far are:

Dr. Janice Gilden of Chicago, Dr. Tom Chelimsky of Cleveland and

Dr. on 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 or via e-mail at

Don.Summers@...

The SDSMSA Support Group also sponsors the e-mail list,

shydrager

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 Lane

Austin TX 78728

All contributions will be acknowledged and are tax deductible.)

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.

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

Email: mulesear@...

3. MULTIPLE SYSTEM ATROPHY RESEARCH NEWS

a. Orthostatic Hypotension Drug Study

Submitted by Lysa Crawford NDRFmc@...

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 or email him at

.Novak@...

4. ODDS AND ENDS

a. 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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