Gail Vass has very well described the PAN Forum - 4 days packed with
research updates, legislative briefings, advocacy training,  and the
great emotional uplift of being among 200+  Parkies and their loved ones
from all over the United States and Canada  (represented by Murray and
Brenda Charters) - all united in the belief that our actions can make a
difference - and that by working together we will defeat this awful
disease.

We  had the honor of  being addressed by Rep. Lane Evans of Illinois, who
is fighting for the right to run for re-election based on his abilities
and his record, while his opponent is attacking  him for having
Parkinson's.  We heard inspirational  send-off speeches by Rep. Mark
Udall  and his sister Anne Udall  (son and daughter of  Mo Udall), as we
prepared to take on the Hill. We felt the presence of  the late Senator
Paul Wellstone, who was a great champion of the Parkinson's community in
Congress, cheering us on and imploring us to take action for what we
believe in.

Below is a  summary of  the key legislative issues discussed during the
Forum. Those who could not attend are encouraged to contact their
Senators and Representatives and also advocate for these issues. There is
more information on the PAN web site : www.parkinsonsaction.org  or you
can call their office for detailed information,  sample letters and
talking points --  800-850-4726

The following are excerpts from PAN's 2004 Action Agenda:
1. Neurotoxin Exposure Treatment and Research Program (NETRP)
Appropriations
"-- a research program of the Department of Defense - investigates the
effects of certain toxins on the nervous system. Knowledge of exposures,
incidence of disease afterwards and research on how the conditions can be
treated or prevented is important  for protecting our  military
personnel. Much of the research also has applications to civilians, and a
good number of the NETRP grants  fund  Parkinson's research. NETRP funds
research in 22 states. Funding for FY 2004 is $26 million. $57 million is
sought for FY2005."

2. NIH  Appropriations

"The President has proposed only a 2.7% increase for the NIH in FY 2005.
This would not even keep up with biomedical inflation and would not fund
all ongoing biomedical research, let alone new projects. Congressional
support for a 10% increase is sought. Additionally ask your Reps and
Senators to suppport strong Congressional language supporting ongoing and
new Parkinson's disease research efforts. The Parkinson's Research Agenda
developed by the NIH in 2000 called for an increase of $1 billion to
fully fund PD research over 5 years. It has never been fully funded ."

3. Department of Veteran's Affairs Parkinson's Disease Reseach, Education
and Clinical Centers -

"These 6 centers were started in 2001 and operate as a national
consortium. They conduct research in biomedicine, provide rehab and
health services and run clinical trials for at least 40,000 PD patients
who are veterans, each year.   The President has proposed cutting the VA
medical and support funding by $50 million in FY 2005. Request support
for increased funding for these centers."

4. Somatic Cell Nuclear Transfer (SCNT)

NOTE:  I realize there are some list members who are  not in favor of
this research.  If you are one of them, just skip this section, but
PLEASE support the rest of the PAN Agenda . The funding issues are
equally as important, and need the support of all of us.

"PAN supports research involving both adult and embryonic stem cells.
Both have shown promise, but many scientists believe and studies have
shown that embryonic stem cells will likely be more effective in curing
(certain) diseases....SCNT has the potential to treat and provide better
understanding of deadly and disabling diseases that affect more than 100
million Americans such as cancer, heart disease, diabetes, Parkinson's,
Alzheimer's, MS, spinal cord injury and many others. ...
Placing restrictions on this type of research has a chilling effect on
biomedical research in the U.S. ...We have already seen reseearchers move
to countries such as the UK, Singapore, Israel, Sweden and Australia,
which have more supportive policies..."

Ask your Senator to support the Hatch-Feinstein-Specter-Kennedy-Miller
bill - S.303 -  that would ban reproductive cloning, but protect research
freedom and permit regenerative medicine.

Additionally, a letter to the President is being circulated in the House
(the Castle-DeGette-Cunningham-Dooley Dear Colleague letter seeking
expansion of the current federal policy on embryonic stem cell research.
" Ask your Representative to sign on.

5. Finally "ask your Representative to join the Working Group/Caucus on
Parkinson's Disease. The Working Group began in the House, and now has
over 60 members.  It's mission is to increase PD awareness among members
of Congress and improve the state of PD research. The Caucus is  now also
open to Senators .
Ask your Representatives to contact Mandy Wimmer in Lane Evans' office
(202-225-5905) or Jane Williams in Rep. Fred Upton's office
(202-225-3761). Senators whould contact Oliver Kim in Sen. Debbie
Stabenow's office (202-224-4822.)"


Linda

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