FWD: from Parkinson's Action Network

From: "Laura Jane Cohen" <[log in to unmask]>
Date: Mon, 21 Jun 2004 14:40:30 -0400
Subject: Update to ACTION ALERT! ASK YOUR MEMBER OF CONGRESS TO SIGN ON
TO THE NIH DEAR COLLEAGUE LETTER!

Hi, all!

Below, please find an updated list of folks who have signed on to the
Congressional Working Group on Parkinson’s disease “Dear Colleague”
letter regarding NIH funding.

Great work to all of you out there!  We have several Members signed on
from the same states which let’s us know you all are working your
delegations hard!  Especially New York with a total of 7 Members signed
on to the letter already!

Keep at it!!  The letter is still open…

Thanks so much for all your hard work!

Best-

LJ

Members signed on to the NIH Dear Colleague as of 6-21-04

Representative  State
Spencer Bachus  (AL)
Raul Grijalva   (AZ)
Robert Matsui   (CA)
Bob Filner      (CA)
Henry Waxman    (CA)
Mark Udall      (CO)
Alcee Hastings  (FL)
Robert Wexler   (FL)
Madeleine Bordallo      (Guam)
Neil Abercrombie        (HI)
Jan Schakowski  (IL)
Lane Evans      (IL)
Michael Capuano         (MA)
Stephen Lynch   (MA)
Dale Kildee     (MI)
Karen McCarthy  (MO)
Mike McIntyre   (NC)
Bob Etheridge   (NC)
Tom Udall       (NM)
Shelly Berkley  (NV)
Maurice Hinchey         (NY)
Maurice Hinchey         (NY)
Michael McNulty         (NY)
Jerry Nadler    (NY)
Carolyn Maloney (NY)
Peter King      (NY)
Sherwood Boehlert       (NY)
Ted Strickland  (OH)
Jim Langevin    (RI)
Ciro Rodriguez  (TX)
Sheila Jackson-Lee      (TX)
Jim Moran       (VA)
Chris Van Hollen        (VA)
Jim McDermott   (WA)
Tammy Baldwin   (WI)
Ron Kind        (WI)


Laura Jane Cohen
Director of Outreach
Parkinson's Action Network
1000 Vermont Ave., NW
Suite 900
Washington, D.C. 20005
ph: 202-842-4101  ext. 104
or 800-850-4726
fax: 202-842-4105
[log in to unmask]

www.parkinsonsaction.org


-----Original Message-----
From: Laura Jane Cohen
Sent: Wednesday, June 16, 2004 3:20 PM
To: Laura Jane Cohen
Subject: ACTION ALERT! ASK YOUR MEMBER OF CONGRESS TO SIGN ON TO THE NIH
DEAR COLLEAGUE LETTER!


Hi, all!

It’s seems to perpetually be appropriations time here—no rest for the
weary out there!  Thanks so much for all the hard work and hours you all
have put in lately calling the White House, calling about NETRP, calling
about stem cells.

However, there is more work to be done…

As many of you will remember, every year around this time the
Congressional Working Group on Parkinson’s Disease issues a “Dear
Colleague” letter supporting increased NIH funding for PD to the Chairman
and Ranking Member of the Labor-Health and Human Services Appropriations
Subcommittee (where NIH funding is determined every year).  This letter
is circulated to all 435 members of the House of Representatives.  The
hope is that as many of those Members as possible will sign on to the
letter before it is sent to the committee.

So, we are asking that you call/e-mail/fax your Member of Congress and
ask them to sign on to the Congressional Working Group on Parkinson’s
Disease “Dear Colleague” letter supporting increased NIH funding for PD
research.

Please find a copy of the letter from the Working Group to all Members of
Congress as well as the letter that will be sent to Chairman Regula and
Ranking Member Obey (L-HHS subcommittee) for which we are seeking
signatures.

When you call your Member of Congress, ask to speak to the person in
their office who handles Health Care Issues.  Express your concern about
Federal Parkinson’s Disease research funding and the importance of the
National Institutes of Health in finding better treatments and ultimately
a cure for Parkinson’s Disease.  Tell them that you hope that the
Representative will sign on to this important letter.

If you do not know your Member of Congress’ phone number, you may call
the Capitol Hill Switch Board at 202-224-3121 to be connected.

If you do not know who your Member of Congress is, you may go to
http://capwiz.com/pan/home/ and click on elected officials to find out.

If your Member of Congress would like to sign on to this letter, they may
do so by contacting Mandy Wimmer (Rep. Lane Evans’ office) at
202-225-5905, Kerry Ann Watkins (Rep. Peter King’s office) at
202-225-7896, Orly Isaacson (Rep. Carolyn Maloney’s office) at
202-225-7944 or Eben Carle (Rep. Sherwood Boehlert) at 202-225-3665 to
sign the letter.
----------------------------------------
June 3, 2004

A CURE FOR PARKINSON’S DISEASE IS WITHIN REACH

“The scientific community and I believe that with a significant
investment in Parkinson’s research, new discoveries and improved
treatment strategies are very close at hand.”

– Michael J. Fox on finding a cure for Parkinson’s Disease

Dear Colleague:

Over the past few years, Parkinson’s Disease has received increased
public attention. The heightened awareness of the disease has largely
been brought by public figures who have Parkinson’s Disease, such as
Michael J. Fox, Muhammad Ali, Rev. Billy Graham, Pope John Paul II, Janet
Reno, and Johnny Cash. However, in the scientific community, Parkinson’s
Disease is gaining prominence because of the recent breakthroughs in
managing and treating the disease.

The Parkinson’s community believes recent research holds great promise
for a cure for the disease. They have good reason for their optimism.
Patients with Parkinson’s have seen many advances in treatment options in
recent years and the prospects for a cure have become tangible. In fact,
a cure for Parkinson’s could be on the horizon with the next five to ten
years if adequate funding is dedicated to research on the disease.

Over one million people – young and old, male and female – in America
suffer from Parkinson’s disease. This degenerative disorder attacks cells
in the brain, causing a progressive loss of muscle control, leading
eventually to paralysis. But, it does not have to end this way. The
National Institute of Health has developed a comprehensive agenda to
aggressively pursue a cure for Parkinson’s Disease. This agenda deserves
the support of Congress.

Please join us in signing the attached letter to the Appropriations
Committee urging full funding for NIH’s Parkinson’s research agenda in FY
2005. With this strong commitment, we will bring a cure within reach.
Please contact Mandy Wimmer (Evans) at 5-5905, Kerry Ann Watkins (King)
at 5-7896, Orly Isaacson (Maloney) at 5-7944 or Eben Carle (Boehlert) at
5-3665 to sign the letter. Thank you for your consideration.

Sincerely,
        LANE EVANS
      PETER KING

        Member of Congress
      Member of Congress


        CAROLYN MALONEY                         MARK UDALL

                                                                        SHERWOOD BOEHLERT

Member of Congress                      Member of Congress
Member of Congress




June XX, 2004

The Honorable Ralph Regula                              The Honorable
David Obey

Chairman                                                Ranking Member

Appropriations, Subcommittee on                 Appropriations,
Subcommittee on

Labor, Health and Human Services, Education             Labor, Health and
Human Services, Education

2358 Rayburn House Office Building                      1016 Longworth
House Office Building

Washington, DC 20515-6024                               Washington, DC
20515-6024

Dear Chairman Regula and Ranking Member Obey:

We respectfully request an increase in federal funding for medical
research in general and Parkinson’s disease research in particular.  Over
the years, we have made valuable investments in medical research by
financing the National Institutes of Health (NIH).  The Parkinson’s
community strongly supports continued investments in biomedical research
and encourages the Committee to provide an increase of 10 percent to the
NIH budget in Fiscal 2005, which would bring its total budget to $30.6
billion.

Recent advances in Parkinson’s disease research have given us great hope
that a cure is on the horizon.  The science regarding Parkinson's has
advanced to a stage where greater management and coordination of the
federally-funded research effort will accelerate the pace of scientific
progress dramatically and soon lead to a cure.  In light of these
developments, NIH developed a five-year Parkinson’s Disease Research
Agenda (PDRA) in 2000.  In the last four years, Congress has called upon
NIH to fund this plan.  As the PDRA completes its initial course of
action in March 2005, we understand that NIH has used this agenda as a
springboard for further goal setting for Parkinson’s disease research,
producing the Parkinson’s Disease Matrix.  This Matrix identifies
research priorities for both private and public projects, rates project
risk, and establishes this within a timeframe.  We urge you to aid in
NIH’s transition from the PDRA to the Matrix by strongly supporting NIH’s
recommendation of full funding for Parkinson’s disease research at $442.6
million for FY05.

More than one million Americans suffer from Parkinson’s disease.  NIH’s
research agenda gives the best chance for scientists to achieve the
breakthroughs that will lead to effective treatments and eventually a
cure for these individuals.  Already, NIH’s program is making
breakthroughs in the treatment of Parkinson’s disease and serves as an
excellent example of the type of collaboration that is moving us closer
everyday toward a cure for Parkinson’s.

We encourage your continued support of the Parkinson's community.  Thank
you for your attention and consideration of this matter.

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