SDS/MSA SUPPORT GROUP NEWSLETTER
 1-866-SDS-4999
www.shy-drager.com

Fourth Quarter, 2000
Austin, TX.



"To Educate and Support"


We are new and Improved

by Don Summers


Hi everyone. I am pleased to write an introduction to the very first
e-publication of the SDS/MSA Newsletter! We've all waited a long time for
this event. Our intentions are to publish a thorough and informative
newsletter each quarter. In these publications we will provide as much
helpful and informative information as possible and do our best to get it to
each of you in a manner that is enjoyable and understandable.

There will be opportunities for input from you, particularly in the area of
helpful hints and tips from both patients and caregivers. Also, I would like
to see in future issues, comments about good relationship with your primary
care physicians.

Enough from me! Enjoy being part of a first!

My very best regards to each of you and your families!


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CONFERENCE HIGHLIGHTS

SDS/MSA Support Group

Cleveland, OH. Sept. 15-17,2000


The 12th Annual SDS/MSA Support Group Conference was held at the Hilton
Garden Inn in Cleveland, Ohio on September 15 - 17, 2000. President Don
Summers welcomed returning and new patients, caregivers and thanked the
physicians for coming. A special welcome and Thank You to Dr. Tom Chelimsky
for hosting the meeting. The purpose for the meeting is to 'Educate and
Support' which is our motto.

We had a great turnout. There were 31 new attendees, 5 returning from last
year, 7 physicians/medical staff and 3 board members totaling 46 who attend
the conference this year.

Dr. Tom Chelimsky introduced the doctors who were present: Dr. Donald
Bodner, Dr. Janice Gilden, Dr. Fetnat Fouad-Tarazi, Dr. David Riley, and
Cindy Lindeeman came later to the afternoon session.

There were presentations given by each of the doctors. We all leaned a lot
from them. The doctors formed a panel and answered the patients and
caregivers questions.

After lunch, Nan Todd gave a presentation on Being Prepared with your loved
one and with your physician. Cindy Lindeeman, a Physical/occupation
therapist, gave her presentation and talked about some of the things she
brought to aid the patients with their needs, such as drinking cups and
walking sticks.

After the afternoon snack, the patients and caregivers broke out into
separate sessions. Sylvia Dickinson was the facilitator for the patients
session and Don Summers was the facilitator for the caregivers session.

The day ended after the sessions.

Sunday mornings meeting opened with a continental breakfast. Don Summers
opened the general discussion with the group that was still in attendance.
(Several folks had to miss the Sunday meeting.) A big concern was about
getting the information out to others that couldn't make it to the meeting.
Several suggestions were offered including to video the next meeting via Web
Cam for those who have computers. We are also going to have a release form
at the next conference so the names of the attendees can be made public.

Sylvia Dickinson gave her thanks for putting in a long day.

There were question and answer time. One of the questions asked was 'how is
the city picked for the conferences'? Don S. explained that the Support
Group meeting is usually held in conjunction with the American Autonomic
Society conference when it is held in the continental U.S. Being the 1999
and 2000 conferences were held out of the continental U.S., alternate
locations had to be made. The concentration of patients and easy access for
the patients are important considerations when choosing a location.
Cleveland was chosen by Don when he asked Dr. Chelimsky if he would like to
host our conference for 2000.

Comments from the group on the conference:

Location was easy to get too.

Interaction with the Doctors, patients and caregivers were great.

Reassurance that one is doing the best they can because no one seems to know
that much about the disease.

Warm emotional experience meeting others with the disease.

Presenters were caring, knowledgeable and enthusiastic.

Meetings were quick

Food was of a variety that patients could eat.

Doors were light enough to open.

Snacks were good.

Temperature of the room was good.

Mobility in the room was good.

Need bigger lead time for meeting notice.

On to the Business Meeting

The financial report was read. Fund raising was a big and important issue.
Shire U.S. Inc. is now our sponsor. They have acquired Roberts
Pharmaceutical who previously sponsored us. We need to start raising funds
and are asking you to help. Several fund raiser ideas were expressed. Don
Crouse is our Marketing Director and Fund Raiser Chairman and would
appreciate any help or support you can offer.

Other committees were defined as Fact Sheet/Education;
Newsletter/Publications; Website; Member Services/Recruitment.

If you have a computer you can go to our web site www.shy-drager.com and
view some of the photographs that were taken.

We hope to see more of you at our conference next year. The date and
location will be announced soon.

*******************************************

CONFERENCE HIGHLIGHTS

American Autonomic Society

Rio Grande, Puerto Rico

October 27-29, 2000

 Dr Roy Freeman welcomed the numerous physicians and medical staff to
Eleventh International Symposium on the Autonomic Nervous System. Sixteen
countries were represented with presentations and/or Poster displays. There
were 7 presentations on Orthostiatic Hypotension/Orthostatic Intolerance; 8
presentations on Cerebral Autoregulation; 5 presentations on Syncope; 3
presentations on Central Nervous System; 8 presentations on Peripheral
Nervous System; 7 presentations on Baroreflex and Chemoreflex; 7
presentations on Baroreflex Function; and 10 presentations on Orthostatic
Intolerance. Each presentation was given 15 minutes with a short question
and answer time after the presentation. These sessions ran from 7:30 a.m. to
12:30 p.m. with a coffee break at 9:55 a.m. This was a very rigid schedule
and they really kept to it. The poster display was from 12:30 to 1:30 p.m.
After that it was free time. Friday sessions started again at 7:00 p.m. and
ran until 10:00 p.m. Saturday was the same schedule until 10:00 a.m. when
they held their 30 minute business meeting. Don Summers gave a 7 minute
pep-talk to the physicians thanking them for their dedication to finding a
cause and a cure for SDS/MSA patients. Dr. Freeman introduced Felicia B.
Axelrod as the next president for 2000-2001. The next conference will be
held in California. Location and date to be announced later.

Saturday night was the Presidents dinner for all attendees and their guests.

Sunday was presentations until 12:30 p.m. The conference ended after the
1:30 poster display session.

One of the presentations that really caught attention was Water drinking
acutely attenuates orthostatic and postprandial hypotension in patients with
autonomic failure. There was an article in The Vanderbilt Autonomic Letter
that is written in layman's terms that I would like to include here.

Water, An Unexpected Pressor Agent

For many years, medical textbooks have been very clear that sodium rather
than water is the primary dietary determinant of blood pressure control.
When MSA patients began describing improved functional capacity following
water ingestion, they were initially met with skepticism. However, in a
series of investigations during the past two years, Vanderbilt investigation
have documented not only that the drinking of water can raise blood
pressure, but that it often raises it more than any currently used drug.

On the average, 16 oz of tap water raised blood pressure about 40 mmHg, with
a peak effect about a half hour after drinking. The magnitude of this effect
was very surprising and encouraged subsequent studies in healthy young and
healthy elderly volunteer subjects. Although water had little effect on
blood pressure in young normal subjects, there was a 12 mmHg increase in
blood pressure in older subjects, indicating that recent water ingestion is
an important variable in blood pressure level in even healthy persons. This
will require substantial changes in the way new drugs are evaluated and in
the way hypertension is monitored by physicians in the future.

Most importantly, this provides a new and more effective means to treat the
blood pressure abnormality in Shy-Drager syndrome. In some individuals, the
careful administration and withholding of eater at various times during the
day has been the only form of treatment of blood pressure that has been
required. Much further work is needed on this subject, but all physicians
need to be aware that water ingestion is a powerful pressor stimulus in
conditions associated with autonomic impairment and that it can be extremely
helpful during the daytime when patients wish to be up. Conversely, it might
be detrimental during the night when patients are supine, and when the
pressor effect might raise blood pressure dangerously high.

*******************************************

RESEARCH REPORT

By Dr. David Robertson

Multiple System Atrophy: Now a Major Research Priority

For many years, only a few physicians were working to discover the cause and
treatment of multiple system atrophy. This changed perceptibly in the 1990s
as Physicians interested in the autonomic nervous system organized the
American Autonomic Society. At the same time, neurologists interested in
Parkinson's disease began taking a greater interest in MSA. Now for the
first time in history there is a critical mass of physicians and scientists
whose major interest is in understanding and curing this disease.

Extraordinary achievements have recently been made. At first the Shy-Drager
syndrome seemed like a particularly severe form of Parkinson's disease. Now
the clinical differences have begun to emerge. The poor response to
levodopa, the early autonomic involvement, the prominent urinary tract
symptoms, cerebella involvement, apnea, emotional volatility and cranial
nerve involvement and peripheral neuropathy are recognized as characteristic
of MSA rather than Parkinson's disease. Differences in physical findings
also soon emerged: the cold hands of the MSA patient.

What is exciting to us now is the identification of significant functional
differences in MSA and Parkinson's disease. For example, we now understand
that in Parkinson's disease, surprisingly, there is significant involvement
of the autonomic nerves in the heart, and many Parkinson's patients seem to
lose almost all of their cardiac sympathetic nervous system innervation. In
MSA, normal levels of sympathetic innervation of the heart seem to be
present. This is encouraging because it means that the nerves are still
there if we can just learn to control them properly.

The importance of this was made clear by recent studies using the drug
trimethaphan, which transiently shuts down both parasympathetic and
sympathetic activity. It was found that in MSA patients, this drug greatly
altered blood pressure and heart rate, proving that even though the patients
had orthostatic hypotension, they still had plenty of sympathetic control of
their vessels. It is just that this control could not be marshaled
appropriately by the brain to do the job it needed to do.

Yet, the most exciting new research is focusing on the similarities emerging
in many of the neurodegenerative diseases such as MSA, Parkinson's disease,
and even Alzheimer's disease. alpha-Synuclein has been identified in tiny
bodies in the brain cells of patients with MSA. These are called glial
cytoplasmic inclusions and while structurally distinct from the Lewy bodies
of Parkinson's disease, nevertheless, seem to have many of the same
components in them. The widespread presence of this alpha-synuclein has
encouraged some scientists in the past few months to classify Parkinson's
disease and MSA by the new name of "synucleinopathies." alpha-Synuclein is a
normal component of the human genome. Therefore, it obviously has some
important purpose although that purpose is not now understood. Still, when
it is present in such extraordinarily high concentrations in the brain cells
of patients with MSA, that surely must be telling us something about the
cause of MSA. alpha-Synuclein does not appear to be the culprit causing MSA
but it may only be one or two steps away. That offers much hope for
understanding MSA. In alpha-synuclein, we may not yet have discovered the
perpetrator, but at least we have apprehended one of the accomplices. And we
expect to learn a great deal from this accomplice.

Clearly, we have made greater progress in understanding the cause of MSA in
the past three years than in the previous 100 years. There is every reason
to expect more progress in the future. I have never been more optimistic
about discovery of the cause of MSA than I am in the millennial year.

*******************************************

WE NEED YOUR HELP!!!


The SDS/MSA Support Group needs your help to increase the public awareness
of SDS/MSA Some of the ways this can be accomplished are:

1. Write or call your U.S. Representatives and Senators, encouraging them to
allocate more funding for Autonomic Research.

2. Encourage Physicians to learn as much as possible about the diagnosis and
treatment of SDS/MSA.

3. Become a member of the group! Call 1-866-SDS-4999 and become a member.
Membership is open and free and your information can be taken over the
phone. Or send email to [log in to unmask] or write to:

SDS/MSA Support Group - Membership

2004 Howard Lane

Austin, TX. 78728

4. Volunteer your time! We have several committees you can lead or be a part
of:

Fund Raising - contact Don Crouse

Member Service/Recruitment - contact Nan Todd

Newsletter/Publications - contact Don Summers

Web Site - contact Sylvia Summers

The addresses can be found under Board of Directors.

We also need financial help to keep the support group going. With the growth
that we are experiencing it is no longer possible to expect Shire U.S. Inc.
to carry the whole load. If you are able to contribute financially contact
the group president, Don Summers.

You all have a part! Remember our Mission: "To Educate and Support". We see
the process as a circle with information and support constantly making the
rounds from patient, to caregiver, to family member, to physician. Please
join us in our efforts to educate and support one another!

******************************************

 We are very sad to say Sylvia Dickinson has resigned from the Board. We
have added three new members: Nan Todd, Chris Pearson and Sylvia Summers.

 Current Board of Directors

Don Summers - President
2004 Howard Lane
Austin, TX. 78728
1-866-SDS-4999
[log in to unmask]


Donald Crouse - Marketing Director/Fund Raising
20 Tower Hill Drive
Red Bank, NJ. 07701
[log in to unmask]

Dr. David Robertson MD - Physician Advisor
Clinical Research Center
Room AA-3228
Medical Center North
Vanderbilt University
Nashville, TN. 37232-2195

Nan Todd - Support Group Coordinator
2514 N. 11th St
Sheboygan, WI. 53083
[log in to unmask]

Chris Pearson - Shire US Inc. Representative
7900 Tanners Grate Dr.
Florence, KY 41042
1-800-282-2100
[log in to unmask]

Lyn Wood R.N. M.S.N. - Caregiver Representative
Evergreen, Co.
(not active at this time)

Sylvia Summers - Webmaster/Admin. Assistant
2004 Howard Lane.
Austin, TX. 78728
[log in to unmask]

*******************************************

Support Groups in your Area

NATIONAL HEADQUARTERS:

SDS/MSA Support Group Inc.
2004 Howard Lane
Austin, TX. 78728 U.S.A.
Phone: 1-866-SDS-4999 or 1-800-288-5582
Fax: 512-251-3315
Contact: Don Summers, President
email: [log in to unmask]


REGIONAL SUPPORT GROUPS

Ohio SDS/MSA Support Group
Contact: Judy Biedenharn
3954 Larchmere Drive
Grove City, OH. 43123
phone: 614-873-5531
email: [log in to unmask]


Washington, DC Area SDS/MSA Support Group
Contact: Bill Werre
1308 Dulles Place
Herndon, VA. 20170-3818
phone: 703-471-7215
email: [log in to unmask]
or
Perry Sennewald
1108 Pheasant Crossing
Charlottesville, VA 22901-6204
804-244-0018
email: [log in to unmask]

Boston, MA Area SDS/MSA Support Group
Contact Carol Langer
21 Winthrop Road
Lexington, MA 02421
phone: 781-862-5435
email: [log in to unmask]

Minnesota SDS/MSA Support Group
Contact: Diane Rydrych
2628 Harriet Ave #1
Minneapolis, MN. 55408
email: [log in to unmask]

Middle Tennessee SDS/MSA Support Group
Contact: Christine Latham
1428 East Cedar Lane
Nashville, TN. 37115
email; [log in to unmask]


Western Tennessee SDS/MSA Support Group
Contact: Amy Beckman
2741 Higbee Ave
Memphis, TN. 38111
Phone # 901-452-7443.
email: [log in to unmask]

Oregon SDS/MSA Support Group
Contact: Judy Mears
1512 Kenard St. N.W.
Salem, OR. 97304
phone:503-581-8941
email: [log in to unmask]

N. California SDS/MSA Support Group
Contact: Sophia Dohm
10 Bay Tree Hollow
Novato, CA. 94945
phone: 415-897-8993
email: [log in to unmask]


IMPORTANT DATES

Oregon Support Group meeting
Oregon Health Science University Library
January 14th, a Sunday at 2p.m.

International Conferences on Catecholamines, Alzheimer's and Parkinson's
Diseases
(Kyoto, Japan) March 1-April 5, 2001