Multiple System Atrophy News - March 2002

Table of Contents

1. MSA Annual Patient Conference Rescheduled in Boston May 3 - 5, 2002
2. MSA Donations
3. Announcing the European Multiple System Atrophy Study Group
4. Boston Globe article on MSA
5. New fact sheet explaining Olivopontocerebellar atrophy (OPCA)
6. News from the Center for Neurodegenerative Disease Research

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1. MSA Annual Patient Conference Rescheduled in Boston May 3 - 5, 2002
(Contributed by Don Summers [log in to unmask])

We're back on track for Boston!!!!!

The Boston Meeting for MSA Patients, Families & Researchers has been
re-scheduled for

May 3rd thru 5th, 2002

As initially scheduled, the meeting will take place at the Holiday Inn,
Logan Airport.  Again, a block of rooms has been reserved in
the name of "THE SDS/MSA SUPPORT GROUP".
Reservations may be made by calling either the hotel direct
at 617-569-5250 or the Holiday Inn toll free number, 800-465-4329.
When requesting room reservations, please use the following
identifier code: 2SDS

The rooms are reserved at $129.00 per night.  The facility is within a mile
of the airport and offers free shuttle service to and from the airport. Call
the Holiday Inn, Logan Airport from the free phone near the baggage claim
area.   Handicapped rooms are available. Please inform the staff of
your special needs when you register and when you arrive.

GENERAL MEETING SCHEDULE
Friday, May 3rd
7:00 PM -- Registration and Social Hour

Saturday, May 4th
8:00 AM -- Buffet Breakfast
9:00 AM -- Meeting begins
12:00 Noon to 1:15 -- Lunch
1:15 to 5:00 -- Meetings Continue

Sunday, May 5th
9:00 AM to 10:00 AM -- Continental Breakfast
10:00 AM to 12:00 Noon -- Wrap-up session and general business meeting
(A detailed schedule will be available at registration.)

Dr. Roy Freeman of Beth Israel-Deaconess Medical Center will be our host
and has arranged for several guest speakers.

There is no cost for the meeting.  Scheduled meals are provided by the
SDS/MSA Support Group.  Your lodging, transportation and other meals are at
your expense.

Please e-mail me [log in to unmask]
if you plan to attend.  In your e-mail please include the following:

1. Your name
2. Your home city
3. The number of people attending

This information is urgently needed to finalize food services!

Don Summers
President
SDS/MSA Support Group
1-866-SDS-4999
email: [log in to unmask]
website: http://www.shy-drager.com

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2.   MSA Donations

These are two of the most popular options for  MSA donations in the USA.
If you need suggestions for donations in other countries let me know.

a. The SDS/MSA Support Group

The SDS/MSA Support Group now has memorial envelopes
available. These envelopes are pre-printed with the
address of the Support Group and have a space inside
to enter the name of the person the gift is intended
to be allocated to.  They are tastefully done and are
available in any number to survivors.

Please notify me if you wish to distribute these
envelopes at the memorial services for your loved
ones.

Don Summers
President, The SDS/MSA Support Group
email: [log in to unmask]
Toll free: 866-737-4999

The Shy-Drager Syndrome/Multiple System Atrophy
Support Group is a full non-profit organization
approved by the Internal Revenue Service.
Donations fund the entire operation of the Group.
Services include:
 - a toll-free number to call for information and
physician referral
 - the maintenance of the group website
http://www.shy-drager.com
 -  access to the Shydrager mail list
 -  an annual patient/caregiver/family member meeting
with prominent physicians.

Please visit the website at www.shy-drager.com
Don Summers can be reached at this toll-free number,
866-737-4999

Contributions of any amount may be mailed to:

The SDS/MSA Support Group
2004 Howard Lane
Austin, Texas 78728

b. Vanderbilt Shy-Drager Research Fund

Family members and friends of patients with Multiple
System Atrophy or Shy-Drager syndrome have
occasionally expressed an interest in making a
financial contribution that can be used for research
on this condition.  Accordingly, we have established a
fund for this purpose.  All gifts are very much
appreciated.

Donations for Multiple System Atrophy or Shy-Drager
syndrome research can be sent to:

Vanderbilt Shy-Drager Research Fund
Vanderbilt University Medical Center
AA-3228 Medical Center North
Nashville, TN 37232-2195

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3. Announcing the European Multiple System Atrophy Study Group - EMSA-SG

"Dear Pam,

With interest I read you mail about the MSA/SHY-Drager "online" support
group. This is just to inform you that there exists a European MSA Study
Group, initiated from the Department of Neurology, University of
Innsbruck (study coordinator: Prof. Werner Poewe, head of the Department
of Neurology, assistant coordinator: Prof. Gregor Wenning).

It would be of great help for us if you could inform your members,
especially those from Europe, about this initiative. More details you
can find on our homepage under

http://www.emsa-sg.org

In case you need more information please let us know.

Kindest regards and many thanks for your help in advance."

Ursula Knapp
EMSA-SG secretariat

Department of Neurology, University of Innsbruck
Head: Prof. Werner POEWE, MD
A-6020 Innsbruck, Anichstraße 35
Telefon: ++43/512/504-3850
Fax: ++43/512/504-3852
Email: [log in to unmask]
[log in to unmask]
EMSA-SG Secretariat: [log in to unmask]

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4. Boston Globe article on MSA
(Contributed by Carol Langer [log in to unmask])

This appeared in the Boston Globe as a side bar in an article about brain
pacemakers.  Tony Swartz-Lloyd is a member of the Boston area MSA
support group.

---

The Boston Globe
January 1, 2002

"For MSA Patients, Remedies Are Elusive"
By: Judy Foreman

Despite the promise of deep brain stimulation for a number of neurologic
problems, there are some conditions for which it doesn't seem to help,
including a baffling - and devastating - condition called multiple system
atrophy, or MSA, one of several diseases loosely termed "Parkinson's Plus."

MSA, a neurodegenerative disease that is often misdiagnosed as Parkinson's,
affects an estimated 25,000 to 100,000 people.

"It's like a thief in the night," said Tony Swartz-Lloyd, 65, a longtime
vice president at Beth Israel Deaconess Medical Center who is now retired
and coping with MSA. "It's a weird and elusive disease. . . . It takes a
little piece of you here, a little piece there. You don't realize what's
missing at first."

MSA, for which there is no long-term effective treatment, often starts, like
Parkinson's, with a loss of dopamine-producing cells in the brain. But
unlike Parkinson's, dopamine-boosting drugs don't seem to help for more than
a couple of years.

Early symptoms of MSA include loss of balance and coordination, difficulty
speaking, a drop in blood pressure upon standing up but high blood pressure
while lying down, stiffness and slowness of movement. Patients often develop
other problems, such as impotence and difficulty urinating, that are
triggered by degeneration in the autonomic nervous system, which controls
involuntary bodily functions.

Despite the gloomy prognosis that many MSA patients face - gradual loss of
many bodily functions and death within six to eight years - there are some
bright spots, notably research suggesting that an underlying problem appears
to be abnormal deposits (on brain cells) of a protein called
alpha-synuclein.

Researchers are also studying neuroprotective drugs to keep brain cells from
dying in diseases such as MSA and Parkinson's, and other agents to help new
brain cells grow.

Copyright (c) 2002 Globe Newspaper Company
Record Number: 0201010293

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5. New fact sheet explaining Olivopontocerebellar atrophy (OPCA):

Finally they've rewritten this topic to include more up to date information.

Note that OPCA can fall under the heading of:
1. MSA - Multiple System Atrophy (sporadic/non-hereditary)
or
2. SCA - Spinocerebellar Ataxia (hereditary)

See: http://www.emedicine.com/neuro/topic282.htm

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6. News from the Center for Neurodegenerative Disease Research.
(Contributed by Steve Crawford [log in to unmask])

"Dear Mr. Crawford,

We have come a long way since the discovery of MSA and this has been driven
by exciting work in the last 4 years on the protein (known as
alpha-synuclein) that forms the toxic aggregates in brain cells of MSA
patients. These new insights into MSA are prerequisites for identifying
targets for novel drug discovery efforts for MSA patients, but this still
requires substantial investments in time and resources.  However, I am
pleased to say Penn and our Center for Neurodegenerative Disease Research
(CNDR; with which Dr. Hurtig and his colleagues work very closely) is now a
leader in research on this subject, so you should know that many of us feel
we have turned an important corner on efforts to develop better therapies
for MSA.  Please visit our CNDR website at the address below for more
information.

http://www.uphs.upenn.edu/cndr/

Finally, as an indication of our optimism about moving forward in
understanding MSA, I can tell you that we have a grant pending now that will
enable experts from across the USA to work together in multidisciplinary
studies of MSA and we are hopeful it will be funded in the near future
thereby enabling us to ramp our activities further in this area of
research."

Sincerely,

John Q. Trojanowski, M.D., Ph.D.
Center for Neurodegenerative Disease Research
Division of Anatomic Pathology
Department of Pathology and Laboratory Medicine
HUP, Maloney 3rd Floor
36th and Spruce Streets
Philadelphia, PA 19104-4283 USA
Tel: 215-662-6399; Fax: 215-349-5909
E-mail: [log in to unmask]

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