From the Parkinson's Action Network
800-850-4726
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ACTION OPPORTUNITIES
August 12, 1999
Sustaining the Efforts and Energy of the Parkinson's Community on
Capitol Hill During the Appropriations Process
Following the energy and momentum generated during the Network's sixth
annual Public Policy Forum, August is an opportune time for the
Parkinson's advocacy community to mobilize into action. Increasingly,
the Parkinson's community is making a significant impact on federal
policymakers — but we need to sustain the pressure to produce
meaningful results. The Congressional August recess offers a chance to
gain the attention of Members of Congress, as many spend time in their
districts and are less distracted by busy Capitol Hill schedules.
The scope and influence of our efforts is limitless — ultimately, it
is up to the Parkinson's community to determine the impact we make on
Congress. There are varying degrees of involvement and multiple ways
to work with your Members of Congress. The more we are able to broadly
organize our efforts, by making use of support groups and other
networks across states and regions, the stronger the voice of
Parkinson's community.
Below is a suggested checklist of activities to begin your efforts
with Members of Congress; however, don't feel limited by this list.
The Network encourages each of you, your support groups and other
organizations to take up the challenge, build upon your previous
efforts and use your most creative and effective ideas and efforts to
get the word out for increased funding for Parkinson's research.
Together, our voices will ensure that Congress and the public recognize
that time is not neutral for people with Parkinson's — we need a cure
now!
**The Parkinson's Message for FY 2000 Appropriations**
In 1997 the Congress overwhelmingly adopted the Morris K. Udall
Parkinson's Disease Research Act, historic legislation authorizing the
National Institutes of Health (NIH) to devote $100 million per year to
Parkinson's-focusedresearch. To date NIH has not funded the Udall Act
— despite increasingly promising research and a compelling national
need.
Congress must act this year to fulfill the promise of the Udall Act by
appropriating a $75 million increase for Parkinson's-focused research
at NIH for FY 2000 — $50 million for the National Institute of
Neurological Disorders and Stroke (NINDS) and $25 million for the
National Institute of Environmental Health Sciences (NIEHS).
Members of the House and Senate Appropriations Committees can help
secure the needed funding and should be high priorities for Parkinson's
disease advocates.
Individual Members of Congress can speak out in support of Parkinson's
research funding and work with the House and Senate Appropriations
Committee Chairs in many ways, including writing a letter or simply
speaking with them.
**August Advocacy Opportunities**
1) Meet with Your Legislators to Ask Them to Support Increased NIH
Parkinson's-Focused Research
*Schedule an appointment with your legislators in their district
offices
*Schedule and organize an appointment with your legislators in their
district office, in which several support group members and a local
Parkinson's expert or researcher attend
*Invite your legislators to attend support group or other local
Parkinson's-related meetings
*Attend one or more of your legislators' "Town Hall Meetings" — you can
call your legislators' office to obtain the meeting schedule
*After you have met with your legislators, follow-up with a letter or a
phone call to their staff thanking them and reiterating your message
*Work with other Parkinson's groups in your state to encourage them to
meet with their legislators, or if they have already done so, work
together to strengthen the Parkinson's support from your state's entire
legislative delegation — contact the Network at 800-850-4726 for more
information
2) Send Your Legislators Letters Requesting That They Support Increased
NIH Parkinson's-Focused Research
*A sample letter to legislators is attached
*Be sure to personalize the letter with your own story so that it will
be more meaningful and stand out among the many letters legislators
receive daily
*Initiate a letter writing campaign within your support group,
challenging each member to work with their family, friends and
community to generate the most letters possible
*Extend your efforts to the entire state so each Member of Congress
from your state receives letters
3) Call Your Legislators to Ask Them to Support Increased NIH
Parkinson's- Focused Research
*Call the U.S. Capitol Switchboard at 202-224-3121 and ask to be
connected to your Members of Congress — or often, you can call your
legislators' district offices (listed in the phone book) and ask to be
connected to the Washington, DC office
*Once connected to Members' offices, ask to speak with the Health
Legislative Assistant (LA)
*Attached is a sample script you may wish to use as a guideline
*If the Health LA wants more information or asks questions you aren't
comfortable answering, ask him/her to contact the Network at
800-850-4726 or call the Network and give us the name of the Health LA
so we can follow-up
*Challenge members of your support group to work with their family,
friends and community to generate the most calls possible
*Extend your efforts to the entire state so each Member of Congress
from your state receives calls
4) Use the Media to Pressure Your Legislators to Support Increased NIH
Parkinson's-Focused Research
*Send a letter to the Editor of your local newspaper, incorporating
your personal story
The letter should be no longer than a page — the shorter, the better
Address the letter to "Letters-to-the-Editor" at the address of the
newspaper (usually located inside the front section of the newspaper)
In addition to sending the letter by mail, email and/or fax the letter
if you have access to those modes of communication
Follow-up with a telephone call to the newspaper to ensure that the
letter was received
Attached is a sample letter to the Editor you may feel free to use as
a guideline or develop into your own letter
Work with other individuals and support groups in your state to try to
secure a published letter to the editor in each of the state papers
*Send an opinion/editorial (op/ed) piece to your local newspaper
The piece should be no longer than 500-700 words and should illustrate
through your personal story the effects of living with Parkinson's and
the need for increased research
You can submit an op/ed to more than one paper, but once you know that
one paper is going to print it, you must contact the other papers to
withdraw the op/ed
Send the op/ed with a brief cover letter to the Op/Ed Editor
explaining the topic addressed in the op/ed
In addition to sending the op/ed by mail, email and/or fax the letter
if you have access to those modes of communication
Follow-up with a telephone call to the newspaper to ensure that the
op/ed was received
Attached is a sample op/ed you may wish to use as a guideline
Work with other individuals and support groups in your state to try to
secure a published op/ed in each of the state papers
*Send an Edit Board Memo to your local newspaper
Edit Board Memos are an effective way to ask editorial page writers
and editors to devote space to a particular issue
Attached is a sample Edit Board Memo you may wish to use as a
guideline, in addition, feel free to contact the Network at
800-850-4726 for more information
Work with other individuals and support groups in your state to try
to secure a published editorial in each of the state papers
***********************************************
Creating and sustaining a successful legislative grassroots movement
can sometimes seem repetitious. While you may sometimes feel as though
you are continuously writing or calling your Member of Congress, that
communication and contact ensures that Parkinson's disease remains at
the forefront of legislators' concerns. The more Parkinson's letters,
calls and meeting requests Members of Congress receive, the more they
will be encouraged to think about efforts to end Parkinson's disease.
It is also important to always try to increase your level of activity
and strengthen your relationship with your legislators and their staff.
The Network works closely with Congress year-round and contact from
community advocates at key strategic times during the Appropriations
process is extremely important!
***********************************************
Good luck in all your efforts during the August recess! And remember
to ask family, friends, Parkinson's activists who may not receive this
mailing, and other members of your community to make the same efforts.
The more voices that join in our efforts, the stronger we become. As
always, please let us know the outcome of your efforts — give us
updates on your phone calls, send us copies of any letters you send to
Members of Congress or the media, etc. Also if there is any way that
we can help, please let us know.
Call: Michael Claeys/Kathy Hayes at 800-850-4726
Email: [log in to unmask]
Fax: 707-544-2363
Mail: Michael Claeys/Kathy Hayes
Parkinson's Action Network
840 3rd Street
Santa Rosa, CA 95404
The Network will be posting weekly e-mails to the Parkinson's
Information Exchange listserve throughout August to help keep the
community informed, engaged and working together. Once Congress has
returned from recess and the Appropriations process continues, we will
send an Action Update so that the community is aware of new
developments.
_________________________________________________________
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