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Hello All!

Appropriations season is in full swing in Congress and I'm writing on
behalf of PAN to give you an update and ask for your help.  The
Labor-HHS Appropriations bill, which funds the National Institutes of
Health, is scheduled to be marked up next week - in the House Wednesday
7/21, and in the Senate Thursday 7/22.  The markups may be postponed
but we need to be prepared and work with the schedule that the
Committees have posted. PAN will update you regarding the status of
both markups as that information becomes available.

The Parkinson's community needs to urge members of this key
Appropriations Subcommittee to increase federal funding for Parkinson's
research.  *If your Member of Congress is listed below as a member of
the Subcommittee, your assistance would be greatly appreciated.*  If
you could take the following actions ASAP (note above deadlines), it
would be extremely helpful:

1) Place calls to your Member on the Subcommittee (see list) using the
attached script as a guide.  If you don't have the phone number, the
Capitol Switchboard at 202-224-3121 will connect you to the office.
2) Fax letters to the Member so that they arrive in time for the
markups, using the attached sample letter as a guide.
3) Ask others (members of your support group, church, community, etc)
to place calls and fax letters as well.
4) Try to schedule appointments with your legislators when they are in
their states/districts during the August recess.

Thank you!  Please keep us updated on your work:  send copies of your
letters to PAN at 840 Third Street, Santa Rosa, CA 95404.  Please call
PAN at 800-850-4726 with any questions.

**List of Members of House and Senate Labor-HHS Appropriations
Subcommittees**

HOUSE
-John Edward Porter, Chairman (R-10th IL)
-C.W. Bill Young (R-10th FL)
-Henry Bonilla (R-23rd TX)
-Ernest J. Istook, Jr. (R-5th OK)
-Dan Miller (R-13th FL)
-Jay Dickey (R-4th AR)
-Roger F. Wicker (R-1st MS)
-Anne Northup (R-3rd KY)
-Randy "Duke" Cunningham (R-51st CA)
-David R. Obey, Ranking Member (D-7th WI)
-Steny H. Hoyer (D-5th MD)
-Nancy Pelosi (D-8th CA)
-Nita M. Lowey (D-18th NY)
-Rosa DeLauro (D-3rd CT)
-Jesse L. Jackson, Jr. (D-2nd IL)

SENATE
-Arlen Specter, Chairman (R-PA)                        -Thad Cochran
(R-MS)
-Slade Gorton (R-WA)
-Judd Gregg (R-NH)
-Larry Craig (R-ID)
-Kay Bailey Hutchison (R-TX)
-Ted Stevens (R-AK)
-Jon Kyl (R-AZ)
-Tom Harkin, Ranking Member (D-IA)
-Ernest Hollings (D-SC)
-Daniel Inouye (D-HI)
-Harry Reid (D-NV)
-Herb Kohl (D-WI)
-Patty Murray (D-WA)
-Dianne Feinstein (D-CA)

**Guideline Telephone Script for Appropriations 1999**

Hello.  This is [name] with the Parkinson’s Action Network.  May I
please speak with the staff person who handles health care issues?
[Yes, voicemail is fine if the person is not available].

My name is ____________ and I am calling to urge
[Senator/Representative] ____________ to support much needed funding
increases for Parkinson’s disease during consideration of the fiscal
year 2000 Labor/ HHS Appropriations bill.

As you probably know, in 1997 Congress overwhelmingly adopted the
Morris K. Udall Parkinson’s Disease Research Act, historic legislation
authorizing the National Institutes of Health to devote up to $100
million per year for Parkinson’s-focused research.  To date NIH has not
fully funded the Udall Act - despite tremendously promising research
and a compelling national need.

I urge your boss to act this year to follow through on the promise of
the Udall Act by supporting funding increases for the National
Institute of Neurological Disorders and Stroke and the National
Institute of Environment Health Science for FY 2000.  To provide the
resources for these much needed increases, I ask the
[Senator/Representative] to support the effort to ensure that the NIH
budget is on track to double over five years.

Please urge your boss to act this year on these important increases by
writing a letter or talking to the Chair of the Appropriations
Committee.  Time is not neutral for people with Parkinson’s - the
disease is progressive, chronic and absolutely relentless - and we
can’t afford to wait any longer.  Researchers have described
Parkinson’s as the “most curable neurological disorder” - but finding
the cure in time for those currently suffering requires the additional
funding authorized by the Udall Act.

[For Representatives Only] Please also ask your boss to consider
joining the Congressional Working Group on Parkinson’s Disease led by
Representatives Carolyn Maloney and Fred Upton.

Thank you.  Can I count on hearing back from you about the outcome of
the fiscal year 2000 Labor/HHS Approriations bill mark-up?  [Give the
staff person your name, address, and phone number so that s/he can
follow up with you.]

[If any questions arise that you do not feel comfortable answering, ask
the staff person to call the Parkinson’s Action Network at
800-850-4726.]


**Sample Letter for 1999 Appropriations**

The Honorable [First and Last Names]
[United States Senate/United States House of Representatives]
Washington, DC   [20510/20515]


Dear [Senator/Representative] [Last Name]:

Like more than one million other Americans, I [my husband/wife/parent
etc.] suffer[s] from Parkinson’s disease - a devastating neurological
disorder that destroys brain cells controlling the body’s motor
function.  I ask that you, as a member of the [House/Senate] Labor/HHS
Appropriations Subcommittee, do all you can to ensure that research
focused on Parkinson’s disease receive the funding called for by
Congress within the fiscal year 2000 National Institutes of Health
(NIH) budget.

In 1997 the Congress overwhelmingly adopted the Morris K. Udall
Parkinson’s Disease Research Act, historic legislation that authorized
the NIH to devote up to $100 million per year for Parkinson’s-focused
research.  To date that funding has not been appropriated -- despite
tremendously promising research and a compelling national need.
Moreover, the NIH continues its disturbing practice of reporting to
Congress funding totals for Parkinson’s that include a significant
amount of research - more than half! - that is not truly focused on
Parkinson’s disease as required by the Udall Act.

I urge you to act this year to follow through on the promise of the
Udall Act by adding to basic Parkinson’s disease research the NIH is
already conducting, specifically funding increases of $50 million and
for the National Institute of Neurological Disorders and Stroke and $25
million for the National Institute of Environment Health Science in the
fiscal year 2000 Labor/HHS Appropriations bill.  To provide the
resources for these much needed increases, I urge you to support
efforts to keep the NIH budget on track to double over five years.

Please act this year on these important increases.  Time is not neutral
for people with Parkinson’s - the disease is progressive, chronic and
absolutely relentless - and we can’t afford to wait any longer.
Researchers are tantalizingly close to the cure, but finding it in time
for those currently suffering requires the additional funding
authorized by the Udall Act.

I look forward to receiving your response.


Sincerely,

[Your Name, Organization, and Address]





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