for those of you who haven't sent in your letters to your government
officials, here's an easy way   ...maybe you all knew about it but I just
discovered a site called www.emergencyroom.com that has a link to the
Senate...just click on it, select California or whatever state you're in and
your senators names come up, click on them to send an email...then I tried a
www.house.com and got my representative .... all I had to do was complete
their  email form with my message.  Apologies to you if you all knew about
it...but at this hour of the morning (I've been up since 2 am) I feel like I
discovered something...Joan
-----Original Message-----
From: Charlotte Mancuso <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Thursday, July 22, 1999 6:28 PM
Subject: CALIFORNIANS: URGENT CONGRESSIONAL ADVOCACY NEEDED


>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]
>