from Mike Claeys, Parkinson's Action Network [log in to unmask]
July 31, 1998
Grassroots Action with Congress Needed During the Month of August
The month of August is a key time to work with legislators. Since Congress
is in recess, legislators spend most of the month in their home districts,
making it easier for them to meet with constituents. Legislators also often
have more time to meet and work with their constituents.
Below is a checklist of activities that we urge you to take during August to
help ensure that Parkinson's disease receives increased research funding.
MEET WITH YOUR LEGISLATORS
- Schedule an appointment with your legislators in their district offices
during the upcoming August recess.
Or*
- Invite your legislators to attend your support group meeting or schedule a
special meeting when your legislator can attend.
- Attend one or more of your legislators' "Town Hall Meetings." You can call
your legislator's office to get the meeting schedule.
SEND THEM THE MESSAGE
- Get the right message to Members of Congress.
- Fully fund the Udall Parkinson's Research Act (P.L. 105-78) by ensuring that
the FY 1999 appropriation for the National Institutes of Health (NIH) includes
at least $100 million in Parkinson's-focused research, as provided in the
Udall Act. (Contact the Parkinson's Action Network for a copy of "Full
Funding for Parkinson's Research")
- The NIH currently plans to spend far less than $100 million on Parkinson's
focused research in FY99. The NIH says it will spend $106 million in FY 99 on
Parkinson*s research but $62 million of that is allocated to "related"
research that will not be spent on Parkinson's-focused grants as the Udall Act
requires.
- Without Congressional action the NIH will spend most of the $100 million
required to fully fund the Udall Act on research not focused on Parkinson's.
FOLLOW UP AFTER MEETINGS
- If you have met with your legislators this year, you need to follow up
regarding whatever promises, assurances or unanswered questions remain from
your visits:
- Ensure that your legislators received the sample letters (contact the
Parkinson's Action Network for copies) for them to send to the Appropriations
Chairmen: Senator Specter or Representative Porter.
- If your legislators agreed to send a letter to the Appropriations Chairmen,
follow up to ensure a letter was in fact sent and ask them to send you a copy.
- If they did not agree to send or have not yet sent a letter, keep working on
them to do so. Persistence pays! They also might be willing to speak
personally with Chairmen Specter or Porter.
- If you have not already met with your legislator:
- Explain that although the Udall Act was passed in 1997, it has yet to be
funded. Ask for their help in securing $100 million in funding for the Udall
Act in FY99.
- Give your legislator the sample letters to the Appropriations Chairmen:
Senator Specter or Representative Porter (contact the Parkinson's Action
Network for copies) and ask that they send the letter to their Appropriations
Chairman.
- If your legislator is not willing to send a letter to the Chairman, ask if
they will speak personally with Chairmen Specter or Porter.
BE PREPARED WITH ARGUMENTS
- Be prepared to respond to your legislator if they say that the NIH already
spends close to $90 million on Parkinson*s research.
- The majority of funds currently spent by the NIH -- despite claims by the
NIH -- are NOT spent on Parkinson's research.
- Key Parkinson's researchers are reviewing a list of grants that the NIH says
it included in the $89 million spent on Parkinson's research in FY97. This
review is ongoing but the preliminary results confirm that most of the money
was spent on grants for other diseases or non-specific research areas.
- Congress must live up to its commitment to fighting Parkinson's disease.
- Be sure to let us know the outcome of your meetings with your legislators.
Call: 800-850-4726, email: [log in to unmask], or fax: 707- 544-2363.
