Hello,
May I call upon you ask those in your California region to respond to the following? Mary,
specifically, would you please post this on your California e-mail list, and also reach out to
groups in your area in any other way you can? We must at last get the Udall funding this year to
fund exciting PD research. We've got to have more funding for NIH to fund those exciting Pro-Ceed
(sp) grants. Let's all work for success in speeding up a cure.
Thank you,
Charlotte Mancuso
//////////////////////////////
Dear Charlotte,
I contacted you last week on behalf of the Parkinson's Action
Network (PAN) about urging Congress to increase federal funding for
Parkinson's research during the Appropriations process. The Labor-HHS
Appropriations bill, which funds the National Institutes of Health
(NIH), was originally scheduled to be marked up in the House on
Wednesday 7/21, and in the Senate on Thursday 7/22. However, both
mark-ups have both been indefinitely postponed. While there is a chance
that either of these mark-ups could take place before the Congress
adjourns for the August recess, it is more likely that the mark-ups will
occur some time after Labor Day.
As you know, the Parkinson's community needs to urge members of
the Labor-HHS Appropriations Subcommittee to increase federal funding
for Parkinson's research -- and Sen. Feinstein is an important member of
the Subcommittee. The postponement of the mark-ups affords the
Parkinson's community an essential opportunity to mobilize and expand
grassroots efforts. Additional calls, letters, faxes and emails can be
sent to Congress, making the dire need for increased Parkinson's
research visible. If you could continue to help organize advocates in
your state or district to take the following actions ASAP (and
throughout the month of August), it would be extremely helpful. We
would like to set a goal of at least 100 calls and 100 letters to each
key Subcommittee member.
1) Place calls to Sen. Feinstein using the attached script as a
guide. If you don't have the phone number, the Capitol Switchboard at
202-224-3121 can connect you to the office.
2) Fax or mail letters to Sen. Feinstein, 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.
The mark-ups of the Appropriations bills can set funding
benchmarks for important programs like Parkinson's research at the NIH.
Securing favorable legislative language during both the House and Senate
Subcommittee mark-up phases increases the likelihood of a favorable
final result Parkinson's research.
PAN will continue to be in contact with you throughout the next
few weeks to help ensure the Parkinson's community makes a unified and
significant impact on Congress, and will update you regarding the status
of both markups as that information becomes available. Please call PAN
at 800-850-4726 with any questions and keep us updated on your efforts:
send us copies of your letters (PAN, 840 Third Street, Santa Rosa, CA
95404), and email [log in to unmask] or call us with reports.
Thank you for all your hard work!
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]
