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From Michael Claeys  Please direct all comments and questions to Michael
Claeys at PAN
Call: 800-850-4726, email: [log in to unmask], or fax: 707- 544-2363.
Parkinsons Action Network
>[log in to unmask]
>Action Alert
>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 copies 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.
Parkinsons Action Network
>[log in to unmask]
>

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Action Alert
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=
=0ACongress is in recess, legislators spend most of the month in their ho=
me=0Adistricts, making it easier for them to meet with constituents.  Leg=
islators=0Aalso often have more time to meet and work with their constitu=
ents.

     Below is a checklist of activities that we urge you to take during A=
ugust=0Ato help ensure that Parkinson's disease receives increased resear=
ch funding.


MEET WITH YOUR LEGISLATORS

Schedule an appointment with your legislators in their district offices d=
uring=0Athe upcoming August recess.  Or . . .

*Invite your legislators to attend your support group meeting or schedule=
 a=0Aspecial meeting when your legislator can attend.

*Attend one or more of your legislators' "Town Hall Meetings."  You can c=
all=0Ayour 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=0Athe FY 1999 appropriation for the National Institutes of Health (N=
IH) includes=0Aat least $100 million in Parkinson's-focused research, as =
provided in the=0AUdall Act.  (contact the Parkinson's Action Network for=
 copies of "Full=0AFunding for Parkinson's Research")

*The NIH currently plans to spend far less than $100 million on Parkinson=
's=0Afocused research in FY99.  The NIH says it will spend $106 million i=
n FY 99 on=0AParkinson's research but $62 million of that is allocated to=
 "related"=0Aresearch that will not be spent on Parkinson's-focused grant=
s as the Udall Act=0Arequires.

*Without Congressional action the NIH will spend most of the $100 million=
=0Arequired to fully fund the Udall Act on research not focused on Parkin=
son's.


FOLLOW UP AFTER MEETINGS

If you have met with your legislators this year, you need to follow up=0A=
regarding whatever promises, assurances or unanswered questions remain fr=
om=0Ayour visits:

*Ensure that your legislators received the sample letters (contact the=0A=
Parkinson's Action Network for copies) for them to send to the Appropriat=
ions=0AChairmen:  Senator Specter or Representative Porter.

*If your legislators agreed to send a letter to the Appropriations Chairm=
en,=0Afollow 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 workin=
g on=0Athem to do so.  Persistence pays!  They also might be willing to s=
peak=0Apersonally 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=
=0Afunded. Ask for their help in securing $100 million in funding for the=
 Udall=0AAct in FY99.

*Give your legislator the sample letters to the Appropriations Chairmen:=
=0ASenator Specter or Representative Porter (contact the Parkinson's Acti=
on=0ANetwork for copies) and ask that they send the letter to their Appro=
priations=0AChairman.

*If your legislator is not willing to send a letter to the Chairman, ask =
if=0Athey 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 alread=
y=0Aspends close to $90 million on Parkinson's research.

*The majority of funds currently spent by the NIH -- despite claims by th=
e NIH=0A-- are NOT spent on Parkinson's research.

*Key Parkinson's researchers are reviewing a list of grants that the NIH =
says=0Ait included in the $89 million spent on Parkinson's research in FY=
97.  This=0Areview is ongoing but the preliminary results confirm that mo=
st of the money=0Awas 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.



-----------------------------------
Parkinson*s Action Network
[log in to unmask]


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