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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.