THIS IS A LONG MESSAGE
RESPONSE TO DAVID EARP - NEW MEMBER - INTRODUCTION TO PAN & UDALL BILL.
ALSO FOR ANY OTHERS WHO HADN'T HEARD THE INFO YET .
My abiliy to write/type etc. is severely affected, so I'm "short-cutting" by
sending you
excerpts/copies of previous documents that hopefully will give you a better
idea of what PAN
is, what the UDALL BILL is, and hoow you can join the grassroots effort to
stop Parkinsons
in our llifetime.
ABOUT PAN: I borrowed most of the info in the following paragraph from an
article
"CRUEL AND UNUSUAL" by Morton Kondracke, April 1996. Of curse his writing was
much better than this, I shortened it to about 1/10th the info ...
THE FIGHT OVER LIFTING A BAN ON federal funding of fetal transplant research
got
Joan Samuelson into Parkinson's activism. In 1988, then a corporate lawyer in
Los Angeles,
an active athlete, and married just a month, she began noticing stiffness and
swelling in her left
knee. An orthopedist prescribed and performed surgery but found nothing wrong
with the
knee. Then she was diagnosed incorrectly as having Multiple Sclerosis. Six
months later it
was determined to be Parkinsons. In 1990 Joan learned that Senator Waxman was
sponsoring a bill to lift ban on federal funding of fetal-cell transplants
that had been imposed
inesecutive orders by Presidents Reagan and Bush at the behest of the
anti-abortion
movement. She offered to help anyway she could.. she then testified before
congress with
Anne Udall and Guy Walden. Anne's father, Congressman Morris (Mo) Udall is
currently in
a nursing care facility unable to move or communicate due to Parkinsons, and
Guy Udall
Walden's family has been affected by Hurler's Disease (three of his children
were born
disfigured and retarded due to the disease) findings of research on fetal
transplant surgery is
promising for Hurler's Disease and Parkinsons and many other diseases. Much
work was
done, the energies and dedication of many others joined the grassroots
effort. Finally, the ban
was lifted when Clinton took office. Amid the fetal-tissue fight, Joan
established The
Parkinson's Action Network (PAN) to give theParkinsons community a voice an
assertive
voice. PAN is spearheading the Mo Udall Bill now. It's the first bill
proposed to provide
direct funding for Parkinsons Research! The following letter I had written
to a congressman
who didn't want to support the bill tells you a little more about the bill:
Congressman S---
115 Cannon Building
Washington D.C. 20515
Re: The Morris K. Udall Parkinsons Research and Education Act S7684 HR1426
otherwise known as the "Udall Bill".
Dear Congressman
Please consider this carefully. We of the Parkinsons Community in Arizona are
not asking for
your pity. We are asking for you help..
Your response to my letter notes that you have supported biomedical
research . But it still does not address the major concern: Parkinsons has
repeatedly been the
"orphaned child" of funds allocated in biomedical research. You may not have
been aware of
this, but in 1994 research funds for Parkinsons was only $26 per patient per
year, while
AIDS got over 1,069, Cancer got $295, and Heart Disease got $93, per patient
per year.
The chart I've enclosed for your review reflects this great disparity. The
irony of this, is ;
leading scientists tell us that Parkinsons is the one neurological disease
closest to a cure. A
cure can be expected within this decade.
PD research continues to get low priority because it
is not a high profile
disease. PD Related institutes of NIH are the lowest given any institute
(NINDS 4.49% and
NIA 4..44%). The "Udall Bill" would authorize $100 million in the National
Instates of Health
(NIH), to conduct PD research, expand basic clinical research into PD,
coordinate the
research agenda, establish research centers, research excellence awards, a
Parkinsons
databank /information clearinghouse, and a national PD education Program
We know that in its' current form, Medicare is unsustainable. Americans'
medical
care needs are increasing as the "baby boomers" generation transforms into
the
"elderly/disabled". Medicare coverage and services are being scrutinized to
cut costs, while
the need for care grows all the more. I'm told Parkinsons costs our nation
$26 billion yearly.
We believe it's higher. Initial survey efforts indicate it's much higher (see
attached).
Respected Scientists have testified that United States' investment in
Parkinsons research promises relief from human suffering, and a major return
on
investment for our country..
. Parkinsons Disease (PD), is a chronic neurodegenerative disorder that
progressively
attacks the body's ability to move. A functioning mind can become imprisoned
by a frozen
body, leaving it's victim unable to move or speak, wholly dependent on others
care for years,
before death. Current medications may temporarily camoflaug symptoms, but
they do not
stop it's progression. .
Over 1 million Americans have PD, and about three million others have
already
unknowingly been struck with at-risk presymptomatic cell degeneration. The
average age of
symptom onset is age 57, 30% are under age 50. According to Dr.William
Kolter of the
University of Kansas over 31% of those employed will lose employment iwithin
a year.
I am clear evidence of that. As a single parent who raised 3 children without
child support,
and without any government assistance, I was diagnosed with Parkinsons at age
36. I am no
longer working. There are so many like me. We've started a grassroots effort
to stop
Parkinsons. Our intelligence isn't affected, and we believe that major
medical findings on the
edge of being further explored can put many of us back to work.. and better
yet, it can stop
this nightmare.
Maryhelen Davila
Arizona advocate - Parkinsons research.
--------------------------------------------clip -
PAN is hoolding a political forum in WAshington DC May 6-10 1996 (a week
away).
Persons waith Parkinsons, their families, friends, and other advocates will
be there. For info
on the forum and on how you can help, call PAN 1-800-850-4726. They might all
(she's got
2 helpers Dyanne and Michael) be in Washington right now though getting ready
for the
forum. You can reach them in Washington DC by calling 1-202-628-279.
Hope you join the effort!
Maryhelen
.
