I am posting the following for Perry Cohen.  For more details please writ=
e=0Adirectly to [log in to unmask]
-------------------------------------
Subj: =09Meeting with Rep Hoyer

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 wasnt a co-sponser.  She also p=
ointed out that=0Aas a member of the minority party Mr. Hoyer has limited=
 influence and Mr.=0APorter (the chair) was not likely to initiate earmar=
king funding. We asked for=0Aa meeting with Mr. Hoyer and were advised th=
at 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. Drew Vass=0Aof Richmond VA, who went on a campaign last year to influe=
nce Congressman=0ABliley, Chair of the House Commerce Committee.  Dozens =
of letters signed by=0Aconstituents resulted in a meeting with the Congre=
ssman where we pointed the=0Astrength of the Parkinson's Grass roots and =
got him to agree that we deserved=0Aa vote on the Udall bill.  This proba=
bly contributed to dampening Mr. Bliley's=0Aopposition and the ultimate p=
assage 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.