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]
>