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I am reposting this important message in its entirety --hopefully without=
 the=0Aglitches.
Please write directly to [log in to unmask] for more detailed information=
.
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In a message dated 6/7/98 8:20:23 AM, PERRYCOHEN wrote:

<<<Barbara: could you please post this on the listserv as an example of h=
ow=0Agrass roots work can succeed>

On Thursday, June 4th, Ed Lassen and Don Price from the Ann Arundal Count=
y=0AChapter of APDA,  Becky Dunlap, I&R Coordinator at Johns Hopkins Univ=
, and=0Amyself (Perry Cohen from DC) had a meeting with Rep. Steny Hoyer =
(D-MD) who is=0Aon the House Appropriations Subcommittee for Labor-HHS (o=
ne of the 29 key=0Atargets for funding the Udall Act).

The meeting was scheduled as a result of grass roots efforts of the Ann=
=0AArundal Chapter which is in the Congressman's district. In April,  Ed,=
 Don,=0APaul Smedberg, and I had a meeting with Lisa Levine, Health aid t=
o the=0ACongressman.  She explained then that Mr. Hoyer had supported the=
 passage of=0Athe Udall bill in the conference committee for last year's =
Labor HHS=0AAppropriations even though he wasn't a co-sponser.  She also =
pointed out that=0Aas a member of the minority party Mr. Hoyer has limite=
d influence and Mr.=0APorter (the chair) was not likely to initiate earma=
rking funding. We asked for=0Aa meeting with Mr. Hoyer and were advised t=
hat we may not be able to get the=0Ameeting, but we should write a letter=
 to the scheduler to request it.

I attended the Chapter meeting of the Ann Arundal support group on April =
28th.
I spoke about the Udall law and what was needed to obtain appropriations.=
 I=0Apointed out how important their individual efforts were and that the=
ir letters=0Aand calls do make a difference.  All 40 attendees at the mee=
ting signed a=0Apetition to Mr Hoyer which read as follows (text of the c=
over page to the=0Apetition with the rational for supporting Parkinson's =
research is attached at=0Athe end of this posting):

Representative Hoyer: We the undersigned urge you to use your influence a=
s a=0Akey leader for health care and advances in medical research in the =
U.S. House=0Aof Representatives Appropriations Committee to urge the sub-=
committee chair,=0AMr. Porter (R-IL), to fully fund $100 million in direc=
t research for=0AParkinson's Disease  in FY99, as authorized by the 1997 =
Udall Act.

Extra copies of the petition were given to all present and they were urge=
d to=0Aget their friends and neighbors to sign.  I cited the example of M=
s. Dru Vass=0Aof Richmond VA, who went on a campaign last year to influen=
ce Congressman=0ABliley, Chair of the House Commerce Committee.  Dozens o=
f letters signed by=0Aconstituents resulted in a meeting with the Congres=
sman where we pointed the=0Astrength of the Parkinson's Grass roots and g=
ot him to agree that we deserved=0Aa vote on the Udall bill.  This probab=
ly contributed to dampening Mr. Bliley's=0Aopposition and the ultimate pa=
ssage of the Udall bill.

Ed Lassen sent the 40 person petition along with our request for the meet=
ing=0Awith Mr Hoyer.  The Ann Arundal group did their homework, and Ed br=
ought over=0A360 additional signatures to the meeting with Mr. Hoyer.

Soon after the meeting began, unfortunately, Mr. Hoyer was called away fo=
r a=0Aseries of votes in the House.  However, we did accomplish our missi=
on.  Ms.=0ALevine indicated, that they were impressed with the total of o=
ver 400=0Aconstituent signatures. She assured us that Mr. Hoyer was not a=
gainst=0Aearmarking.  We invited Mr. Hoyer to attend the Parkinsons Walk =
in Annapolis=0Athis October and told him that Kathleen Kennedy Townsend, =
Lt.Gov. of MD had=0Aagreed to be Honorary Chair. Ed is following up with =
a letter to invite Mr.=0AHoyer. Instead of another meeting,  Ms. Levine s=
aid Mr. Hoyer will write to=0Aindicate what specific actions he will be t=
aking on behalf of Parkinson's=0AResearch.

---------- text of cover letter to petition with rationale for funding PD=
=0Aresearch -------------

PETITION LETTER
=09 =97 summary of rational for funding the Udall Act.........

The Honorable Steny Hoyer
1705 LHOB
Washington DC 20515

Dear Representative Hoyer:

=09This letter is to urge you to demonstrate your vision and leadership b=
y=0Ainvesting in life saving and economically beneficial research on Park=
inson's=0ADisease.   Please use your influence as a key leader for health=
 care and=0Aadvances in medical research in the House Appropriations Comm=
ittee to urge the=0Asub-committee chair, Mr. Porter (R-IL), to fully fund=
 $100 million in direct=0Aresearch for Parkinson's Disease in FY99, as au=
thorized by the 1997 Udall Act.

Political support for action NOW:
 =09The Udall Act for Parkinson's Research  passed last Fall with overwhe=
lming=0Abi-partisan support, including a 95-3 Senate vote to amend the Ud=
all bill to=0Athe Labor/HHS appropriations, and support in the House from=
 254 official=0Acosponsors to the freestanding Udall Bill (HR 1260).
 =09During this past year 50,000 new cases have been diagnosed and 1 mill=
ion=0AAmericans have continued their loss of functioning. They cannot aff=
ord to wait=0Aanother year, especially since the research on Parkinson's =
treatments is so=0Apromising.
 =09The national Parkinson's organizations and an active grass roots comm=
unity=0Afrom all walks of life in every district are solidly unified to f=
und the Udall=0Aact.
 =09The suffering and huge expense of this progressively degenerative bra=
in=0Adisease increases each year as the population ages.  If nothing is d=
one the=0Acost and suffering will soon mushroom as the baby boom reaches =
the higher=0Aincidence ages over 50.

Justification:
 =09This is the "decade of the brain" in science, and more is known about=
=0AParkinson's Disease than any other brain disorder. Scientists are on t=
rack of=0Anumerous fertile research avenues (e.g. the recent identificati=
on of a=0AParkinson's gene) that could lead to better treatment or even a=
 cure within 5=0Ayears.
 =09It makes fiscal and economic sense to invest $100 million (up from ab=
out $30=0Amillion) per year for 5 years to speed discovery of better trea=
tments for a=0Aprogressive disabling disease that affects more than 1 mil=
lion Americans and=0Acosts the economy an estimated $25 Billion each year=
.  It has been estimated=0Athat even a 10% slowing of the progression of =
the disease will save more than=0A$300 million each year on medical and d=
isability costs.
 =09Given the research promise Parkinson's is severely under funded at ab=
out $34=0Aper patient. Until Parkinson's Advocates started pushing for a =
fair and=0Aadequate budget the research funding was flat at around $26 mi=
llion from 1989=0Ato 1995.   To put these numbers in perspective, The Chr=
onicle of Higher=0AEducation reported (4/18/97) that NIH currently spends=
 about $1.86 billion on=0AHIV/AIDS ($2403 per patient), $314 million on A=
lzheimer's ($79 per patient)=0Aand $409 million on breast cancer ($210 pe=
r patient).
 =09In an environment where the Congress rightly sees the value in Medica=
l=0Aresearch, the additional funding required for Parkinson's is affordab=
le and=0Aprudent.

=09Thank you for your support on this important issue.

>>



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Subject: Meeting with Rep Hoyer
Date: Sun, 7 Jun 1998 08:20:23 EDT
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<Barbara: could you please post this on the listserv as an example of how
grass roots work can succeed>

On Thursday, June 4th, Ed Lassen and Don Price from the Ann Arundal County
Chapter of APDA,  Becky Dunlap, I&R Coordinator at Johns Hopkins Univ, and
myself (Perry Cohen from DC) had a meeting with Rep. Steny Hoyer (D-MD) who is
on the House Appropriations Subcommittee for Labor-HHS (one of the 29 key
targets for funding the Udall Act).

The meeting was scheduled as a result of grass roots efforts of the Ann
Arundal Chapter which is in the Congressman's district. In April,  Ed, Don,
Paul Smedberg, and I had a meeting with Lisa Levine, Health aid to the
Congressman.  She explained then that Mr. Hoyer had supported the passage of
the Udall bill in the conference committee for last year's Labor HHS
Appropriations even though he wasnt a co-sponser.  She also pointed out that
as a member of the minority party Mr. Hoyer has limited influence and Mr.
Porter (the chair) was not likely to initiate earmarking funding. We asked for
a meeting with Mr. Hoyer and were advised that we may not be able to get the
meeting, but we should write a letter to the scheduler to request it.

I attended the Chapter meeting of the Ann Arundal support group on April 28th.
I spoke about the Udall law and what was needed to obtain appropriations. I
pointed out how important their individual efforts were and that their letters
and calls do make a difference.  All 40 attendees at the meeting signed a
petition to Mr Hoyer which read as follows (text of the cover page to the
petition with the rational for supporting Parkinson's research is attached at
the end of this posting):

Representative Hoyer: We the undersigned urge you to use your influence as a
key leader for health care and advances in medical research in the U.S. House
of Representatives Appropriations Committee to urge the sub-committee chair,
Mr. Porter (R-IL), to fully fund $100 million in direct research for
Parkinson's Disease  in FY99, as authorized by the 1997 Udall Act.

Extra copies of the petition were given to all present and they were urged to
get their friends and neighbors to sign.  I cited the example of Ms. Drew Vass
of Richmond VA, who went on a campaign last year to influence Congressman
Bliley, Chair of the House Commerce Committee.  Dozens of letters signed by
constituents resulted in a meeting with the Congressman where we pointed the
strength of the Parkinson's Grass roots and got him to agree that we deserved
a vote on the Udall bill.  This probably contributed to dampening Mr. Bliley's
opposition and the ultimate passage of the Udall bill.

Ed Lassen sent the 40 person petition along with our request for the meeting
with Mr Hoyer.  The Ann Arundal group did their homework, and Ed brought over
360 additional signatures to the meeting with Mr. Hoyer.

Soon after the meeting began, unfortunately, Mr. Hoyer was called away for a
series of votes in the House.  However, we did accomplish our mission.  Ms.
Levine indicated, that they were impressed with the total of over 400
constituent signatures. She assured us that Mr. Hoyer was not against
earmarking.  We invited Mr. Hoyer to attend the Parkinsons Walk in Annapolis
this October and told him that Kathleen Kennedy Townsend, Lt.Gov. of MD had
agreed to be Honorary Chair. Ed is following up with a letter to invite Mr.
Hoyer. Instead of another meeting,  Ms. Levine said Mr. Hoyer will write to
indicate what specific actions he will be taking on behalf of Parkinson's
Research.

---------- text of cover letter to petition with rationale for funding PD
research -------------

PETITION LETTER
         — summary of rational for funding the Udall Act.........

The Honorable Steny Hoyer
1705 LHOB
Washington DC 20515

Dear Representative Hoyer:

        This letter is to urge you to demonstrate your vision and leadership by
investing in life saving and economically beneficial research on Parkinson's
Disease.   Please use your influence as a key leader for health care and
advances in medical research in the House Appropriations Committee to urge the
sub-committee chair, Mr. Porter (R-IL), to fully fund $100 million in direct
research for Parkinson's Disease in FY99, as authorized by the 1997 Udall Act.

Political support for action NOW:
        The Udall Act for Parkinson's Research  passed last Fall with overwhelming
bi-partisan support, including a 95-3 Senate vote to amend the Udall bill to
the Labor/HHS appropriations, and support in the House from 254 official
cosponsors to the freestanding Udall Bill (HR 1260).
        During this past year 50,000 new cases have been diagnosed and 1 million
Americans have continued their loss of functioning. They cannot afford to wait
another year, especially since the research on Parkinson's treatments is so
promising.
        The national Parkinson's organizations and an active grass roots community
from all walks of life in every district are solidly unified to fund the Udall
act.
        The suffering and huge expense of this progressively degenerative brain
disease increases each year as the population ages.  If nothing is done the
cost and suffering will soon mushroom as the baby boom reaches the higher
incidence ages over 50.

Justification:
        This is the "decade of the brain" in science, and more is known about
Parkinson's Disease than any other brain disorder. Scientists are on track of
numerous fertile research avenues (e.g. the recent identification of a
Parkinson's gene) that could lead to better treatment or even a cure within 5
years.
        It makes fiscal and economic sense to invest $100 million (up from about $30
million) per year for 5 years to speed discovery of better treatments for a
progressive disabling disease that affects more than 1 million Americans and
costs the economy an estimated $25 Billion each year.  It has been estimated
that even a 10% slowing of the progression of the disease will save more than
$300 million each year on medical and disability costs.
        Given the research promise Parkinson's is severely under funded at about $34
per patient. Until Parkinson's Advocates started pushing for a fair and
adequate budget the research funding was flat at around $26 million from 1989
to 1995.   To put these numbers in perspective, The Chronicle of Higher
Education reported (4/18/97) that NIH currently spends about $1.86 billion on
HIV/AIDS ($2403 per patient), $314 million on Alzheimer's ($79 per patient)
and $409 million on breast cancer ($210 per patient).
        In an environment where the Congress rightly sees the value in Medical
research, the additional funding required for Parkinson's is affordable and
prudent.

        Thank you for your support on this important issue.


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