hi all

in my humble opinion
this is a superb effort!
thank you to the PDF!

and congrats to my cyber-sibling parkies
Mary Yost and Margot Zobel
yowsa!

and three hurrahs for Grace the pd care bear!
she's Grrrrate!

janet

<---- Begin Forwarded Message ---->
Subject: The PDF News
Date: Thu, 27 Jun 2002 13:43:53 -0700

Welcome to your first online issue of The PDF News, our quarterly
newsletter!

Because of your interest and support, we will be providing this to
you via email in the future.   We hope that it will help you keep
up-to-date on the latest research, patient care, and advocacy
efforts that are so vital to us all -- as well as some of the top
news and changes here at the PDF.

In this email, we have summarized several key stories below.  Please
note that a full version of this newsletter is posted on our website
at:

http://www.pdf.org/aboutpdf/publications/news2002sp/news_2002_spring.html

Read on ... and thank you again for your commitment to fighting this
devastating disease.

---------------------------------------------------------------
NIH NAMES PD RESEARCH TARGETS
---------------------------------------------------------------

The government's leading medical research agency -- the National
Institutes of Health (NIH) -- has released a report card on the
quest for the cause and cure of this debilitating neurologic
disorder.  This new report cites six research areas in particular
as priorities:

- "TRANSLATIONAL RESEARCH" that links basic and clinical
studies -- sometimes referred to as the bridging of the space
between "bench and bedside."

- NON-MOTOR ASPECTS OF PARKINSON'S, such as mood disorders
and digestive complications.

- THE DEVELOPMENT OF SO-CALLED "BIO-MARKERS" that would
enable doctors to track how fast and far Parkinson's has developed
in a patient.

- GENE-THERAPY RESEARCH in animals. Only when the procedure has
been shown to be safe would research be extended to human beings.

- THE IDENTIFICATION OF NEW ANIMAL MODELS for Parkinson's studies.

- THE SYSTEMS OF THE BRAIN THAT PRODUCE DOPAMINE -- the chemical
"messenger" that is deficient in people who have Parkinson's.

Much of the material for the NIH report came from comments and
suggestions made at a consortium of scientists and leading
laypersons, convened by NIH on January 7-8, 2002.

---------------------------------------------------------------
LOVE, SEX & PARKINSON'S DISEASE
---------------------------------------------------------------

Love in a long-term relationship can be difficult even in the best
of situations.  But having Parkinson's disease should not be a
deterrent to showing your partner the love you have -- whether you
are the patient or the spouse.

Both partners need to make every attempt to make the expression of
love as warm and tender as possible.   If a fully physical sexual
relationship is no longer possible or wanted (by either or both
individuals), it becomes even more important to find ways to show
your partner that the love between you endures -- sometimes a gift
as simple as a flower or chocolate can make a tremendous difference.

Since there are several "levels" on which Parkinson's disease can
affect a sexual relationship -- physical, medical, and even
cosmetic -- it's very important to talk to one another.
Share your fears, concerns and worries.

Also, read and learn as much as possible about Parkinson's disease
so that the very human fears each of you might have now and in the
future can be put into perspective and properly handled.

---------------------------------------------------------------
PD RESEARCH PROJECTS
---------------------------------------------------------------

One section of the new NIH report on the Parkinson's Research Agenda
lists some of the significant recent scientific discoveries at
Parkinson's research centers.  These include:

- The role that genetic mutations can play in PD;

- The relationship between normal and abnormal declines in the
motor system;

- The value of stem cell research;

- More widespread effect of PD on the nervous system than was
previously thought;

- Increased linkage between environmental agents and PD;

The report also outlines how the work of scientists in basic research
that is not specifically related to Parkinson's can nonetheless yield
valuable insights into the workings of PD.

---------------------------------------------------------------
PDF LEADERS ARE ACTIVE AT AAN MEETING
---------------------------------------------------------------

Several PDF leaders were prominent at the recent American Academy of
Neurology (AAN) meeting in Denver, Colorado.  These included

- Dr. Stanley Fahn (Scientific Director of PDF and President of AAN);

- Dr. Timothy Pedley (PDF Board Member and Chair, AAN Science
Committee);

- Dr. Christopher Goetz (Chief of Movement Disorders at Chicago's
Rush-Presbyterian St. Luke's Medical Center, a leading PDF grantee,
& Co-Chair of the AAN Session on Dopamine Agonists & PD); and

- Dr. Lewis P. Rowland (President of PDF; Board Member of the AAN
Education & Research Foundation and Editor in Chief of Neurology
Today, the monthly AAN newspaper).

To view pictures of the April 16 ceremony for the AAN's Annual
Movement Disorders Award (which is endowed by the the PDF) where
the work of

- Dr. Thomas chase was recognized, please visit our website.

---------------------------------------------------------------
BEARS WHO CARE ABOUT PD
---------------------------------------------------------------

What comes to mind when you think of 'Care Bear'?  This warm, cuddly,
snuggly, cutie of a stuffed animal may be a distant relative of the
'Teddy Bear' -- icon on the national scene for generations -- but he
is at the same time very different from his cuddly cousin.

The message of the 'Care Bear' is deeper than a snuggly, warm
something-to-hold-on-to.  His message is that we are all a lot better
off if we help one another and treat each other as we would like to
be treated.  Caregivers are the backbone and mainstay of people with
Parkinson's as well as many others afflicted with similar neurologic,
degenerative, or chronic illnesses.

The organization behind one of these bears is "H.O.P.E. -- Helping of
People Everywhere."  According to one of the creators, the
Parkinson's Disease Bear is named "Grace" because 'she' represents
the loss of 'grace in motion' that many PWPs experience.  Grace was
created, according to the story that accompanies her, to "honor and
remember those touched by Parkinson's disease".

Another organization that has sent us similar information is The
Charity Bear Company of Saegertown, PA.  Kathy and Jill Hasenkopf,
mother and daughter, create bears for a variety of "cares."  The
Parkinson Bear is coming soon -- be sure to ask them about it!

---------------------------------------------------------------
THE VOICE FROM WASHINGTON
---------------------------------------------------------------

Washington is most important to the Parkinson's community for one
simple reason: there is no potential greater source of funding for
research than the federal government.

While private funds are invaluable -- and are frequently the
catalyst for cutting edge science -- the majority of funds for
Parkinson's research come from the National Institutes of Health
(NIH).

There are many reasons for advocacy, but advocacy for funding is at
the top of the list.  For those of you who have reached out to your
elected officials, we offer a heartfelt thank you. Your letters, phone
calls, and meetings with Members of Congress, yielded tremendous
dividends last year.

While we are poised to build on our momentum from last year, Congress
and the President are facing a shrinking budget.  They need to know
that we in the Parkinson's community are on the precipice of real
breakthroughs if sufficient resources are applied.

The backbone of our grass-roots campaign is for your elected
officials to hear from you, to talk to you, to meet you, to see you.
These are the efforts that will help to ensure that the great strides
made in working toward a cure for this devastating disease don't go
unnoticed.

---------------------------------------------------------------
AROUND & ABOUT THE COMMUNITY
---------------------------------------------------------------

PARKINSON'S UNITY WALK RAISES AWARENESS OF PARKINSON'S DISEASE
On Sunday, April 14th, close to 6,000 walkers gathered in sunny
Central Park to participate in a two-mile walkathon to carry out
event founder, Margot Zobel's, vision to bring PD to an end one
step at a time.

TEAM PARKINSON SETS NEW FUNDRAISING RECORD AT LOS ANGELES MARATHON
On March 3, 2002, seventy two athletes, many with PD, set a new
record by raising over $90,000 for Team Parkinson when they
participated in LA Marathon events.  Team Parkinson, an official
charity of the LA Marathon, was founded by Mary Yost three years ago
to increase Parkinson's disease public awareness and raise funds
for research.

PARKINSONG
The Parkinson Alliance of Princeton, NJ presented the 2nd annual
ParkinSong concert to benefit PD research on Saturday, April 13th
at Council Rock High School in Newtown, PA.  Originated in honor of
Selma Litowitz of Lawrenceville, NJ, ParkinSong is dedicated to her
and all others facing the challenges of Parkinson's disease.

THE RICHARD LINN MEMORIAL: ANNUAL SNOWFEST
Due to lack of snow, the annual snowmobile fundraiser in Crystal
Falls, Michigan (originally scheduled for mid-January) had to be
cancelled. However, countless supporters of the Richard Linn Memorial
sent in contributions to help advance the research efforts of the
Parkinson's Disease Foundation.

---------------------------------------------------------------

We hope that you found this issue of The PDF News valuable.  The next
issue will be on its way in few months.

This disease continues to devastate far too many lives ... and your
support and friendship mean so much to us.

Warmly,

Robin Anthony Elliott
Executive Director

<----  End Forwarded Message  ---->

ps to robin elliott
'devastation' is as 'devastation' does ...

i have not been and will not be
devastated by pd

i have been
challenged by pd

and being challenged
makes me and all of us strong

janet paterson: an akinetic rigid subtype, albeit primarily perky, parky
pd: 55/41/37 cd: 55/44/43 tel: 613 256 8340 email: [log in to unmask]
smail: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0
a new voice website: http://www.geocities.com/janet313/

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