[Congressional Record Volume 143, Number 41 (Wednesday, April 9, 1997)]
[Senate]
[Pages S2917-S2920]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. McCAIN (for himself, Mr. Wellstone, Mr. Glenn, Mr. 
        Cochran, Mr. Burns, Mr. Moynihan, Mr. Harkin, Mr. Dodd, Mr. 
        Leahy, Mr. Bond, Mr. Bingaman, Mr. Campbell, Mr. Mack, Mr. 
        Torricelli, Mr. Grassley, Mr. Inouye, Mr. Hollings, Mr. Robb, 
        Mr. Durbin, Mrs. Boxer, Mr. Bryan, Mr. Daschle, Mr. Ford, Mr. 
        D'Amato, Mr. Reid, Mr. Lautenberg, Ms. Mikulski, Mr. Faircloth, 
        Mr. Levin, Ms. Collins, Mr. Kerry, Mrs. Murray, Mr. Reed, Mr. 
        Kennedy, Mr. Santorum, Mrs. Feinstein, and Mr. Rockefeller):
  S. 535. A bill to amend the Public Health Service Act to provide for 
the establishment of a program for research and training with respect 
to Parkinson's disease; to the Committee on Labor and Human Resources.


   the morris k. udall parkinson's research and education act of 1997

  Mr. McCAIN. Mr. President, today, I proudly reintroduce the Morris K. 
Udall Parkinson's Research and Education Act of 1997. This legislation 
addresses the importance of Parkinson's research by authorizing $1 
million for Parkinson's research.

  Approximately 1 million people in this country are afflicted with 
Parkinson's disease. Parkinson's disease is a debilitating, 
degenerative disease which is caused when nerve centers in an 
individual's brain lose their ability to regulate body movements. 
People afflicted by this disease experience tremors, loss of balance 
and repeated falls, loss of memory, confusion, and depression. 
Ultimately, this disease results in total incapacity for an individual 
including the inability to speak. This disease knows no boundaries, 
does not discriminate, and strikes without warning.
  This important piece of legislation honors Mo Udall, a dear friend of 
mine who served as a dedicated Congressman from Arizona for 30 years. 
Mo is remembered most for his warmth, compassion, integrity, and his 
wit. He was a champion of civil rights, political reform, and a 
protector of the environment. In 1980, Congressman Mo Udall was 
diagnosed with Parkinson's disease and he began his valiant battle 
against this disastrous disease. Mo was forced to resign from Congress 
in 1991, his exemplary career prematurely ended by Parkinson's.
  I was fortunate enough to have not only worked with Mo Udall as a 
Representative from Arizona, but to have Mo as a mentor and a close, 
personal friend. Mo's stewardship and integrity would not allow him to 
become involved in partisan politics. When I arrived in Washington, DC, 
as a freshman Congressman from Arizona, Mo reached across the aisle, 
took me under his wing and provided me with guidance, leadership, 
humor, and, most importantly, friendship. I can never begin to 
adequately thank Mo for all that he provided me and his profound impact 
on my early years as a Member of Congress. In some way, I hope that my 
efforts on his behalf and the millions of others with Parkinson's can 
be a token of appreciation for all that Mo has given me and our 
country.
  Personally, I have witnessed the devastating effects and personal 
tolls which Parkinson's disease has on its victims, as I have watched 
this horrible disease wreck havoc on my dear friend, Mo. I have watched 
Mo, his family, and friends wage a daily battle against this painful 
disease. Every day, Mo and millions like him throughout the country 
face a disease which is physically crippling and financially 
devastating. I can truly empathize with the fear and frustration that 
Mo and others like him must be feeling as they become prisoners within 
their own bodies, clinging to the hope that a scientific breakthrough 
may soon be discovered and they will be liberated from their personal 
prison.
  The Morris K. Udall Parkinson's Research and Education Act provides 
the hope Mo and millions like him are looking for. This bill will help 
us make significant scientific progress by increasing the Federal 
Government's financial investment in Parkinson's research for fiscal 
year 1998 by authorizing $1 million.
  An important component of this legislation will be the establishment 
of up to 10 Morris K. Udall Centers for Research on Parkinson's Disease 
throughout the Nation. These centers will be responsible for conducting 
basic and clinical research in addition to delivering care to 
Parkinson's patients. Uniting these three areas will assure that 
research developments will be coordinated and the care delivered to 
patients will be effective, high quality services based upon the most 
recent research developments. The Morris K. Udall Centers will be 
structural in a manner which allows them to become a source for 
developing teaching programs for health care professionals and 
disseminating information for public use.
  In addition, this bill will create a national Parkinson's Disease 
Information Clearinghouse to gather and store pertinent data on 
Parkinson's patients and their families. This collected data will 
facilitate and enhance knowledge and understanding of Parkinson's 
disease.
  This bill will establish a Morris K. Udall Excellence Award to 
recognize publicly the investigators with a proven record of excellence 
and innovation in Parkinson's research and whose work has demonstrated 
significant potential for the diagnosis or treatment of the disease.
  I am heartened by the tremendous progress scientists are making in 
Parkinson's research. There is significant scientific evidence 
indicating that there is very strong potential for major breakthroughs 
in the cause and treatment of Parkinson's in this decade. According to 
a wide array of experts, we are on the verge of substantial, ground-
breaking scientific discoveries regarding the cause and potential cure 
of Parkinson's disease. We need to seize this rare opportunity to 
discover the cause, treatment, and a potential cure for one of the 
Nation's most disabling diseases. It is imperative that we give our 
scientific researchers the necessary funding and support to combat this 
and other neurological diseases, and to improve the lives of many 
Americans.
  This is why we must enact the Morris K. Udall Parkinson's Research 
and Education Act of 1997. We can't allow this opportunity to make 
significant progress in the area of Parkinson's research slip away 
because of a lack of support for our Nation's scientific researchers.
  Finally, I would like to thank the hundreds of individuals who have 
written or called my office in support of this measure. These 
individuals are committed to seeing this legislation enacted this year 
and are hopeful that Parkinson's research will finally receive a fair 
and justifiable investment from the Federal Government.
  I ask unanimous consent that a small sampling of the many letters I 
have received in support of the Morris K. Udall Parkinson's bill from 
actual Parkinson's patients, family, and friends of Parkinson's 
patients, advocate groups, scientists, and physicians be included in 
the Record.
  There being no objection, the letters were ordered to be printed in 
the Record, as follows:
                                       Phoenix, AZ, April 1, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: My friend Richard and I first met in 
     the lobby of St. Joseph's Hospital Barrows Neurological 
     Institute in Phoenix Arizona. I was in my late thirties, he 
     was in his early fifties, we had both been diagnosed with 
     Young-Onset-Parkinsons Disease. We were both afraid.
       We became friends as we vowed to fight this disease which 
     was trying to imprison us

[[Page S2918]]

     in our own bodies. We had just learned about the ``Udall 
     Bill.'' We had just learned that scientists promised a cure 
     within three to five years if they received sufficient 
     funding. The ``Udall bill'' could make that happen. We saw 
     the promise of a miracle.
       We talked about it in depth. We knew we had been marked for 
     a slow death and we shared with each other how we feared for 
     our families. I raised my three children as a single parent, 
     and my kids were struggling under the weight that my illness 
     had brought us. Richards' wife had just told him that she 
     couldn't stand living with him as he slowly became a freak to 
     observers and she couldn't stand the strain having to care 
     for him through the pain and slow death. So she left him. He 
     felt it wasn't her fault.
       We knew the enemy. The worst thing of this disease was it's 
     slow tortuous progression. We preferred death rather than the 
     years of Hell we were facing. But it was not a choice. With 
     the Udall bill, we might make it. We still had the will to 
     fight. We grasped at hope. We hoped that we could stand the 
     side effects of our medication and hold out until the bill 
     was passed. Once it did, we knew it would take three years 
     for significant improvement in care--but we grasped at the 
     hope. We dedicated the only functioning time we thought we 
     might have left to getting the bill passed.
       We wrote letters, we visited our representatives, we put up 
     flyers, we scrimped and saved to mail letters to friends and 
     to travel to other states to tell them about the bill, but 
     Richard's disease progressed very quickly. Within a year he 
     had to have an attendant at home to feed him, bathe him, 
     dress him. Then he had to go to a nursing home. He was barely 
     able to whisper, unable to walk, unable to sit up without 
     being tied to his chair--his head hung over and his eyes 
     reflected his suffering--He was fully aware of what was 
     happening every minute of his torture.
       I continued my advocacy efforts, including three trips from 
     Arizona to Washington DC to try to help our Representatives 
     to understand why they should pass the bill. And I would go 
     to the nursing home and report to Richard. Last year we came 
     very close, but we didn't make it. I told Richard and his 
     face and neck were wet with tears as I told him to try to 
     just `hang in there' one more year. I had told him that the 
     year before. We both cried. We were afraid. We were alone. 
     Richard whispered that he knew he'd never hold his 
     grandchildren, but he'd not go down without knowing we'd 
     ``kick Parkinsons in the ass'' first. Richard died of 
     Parkinsons Disease last month.
       I'm 44 years now, I have difficulty walking short distances 
     and my strength struggles for me to sit up. Although my 
     medication's losing effectiveness and side effects don't 
     cease, I'm still here. Still holding on. With your help, I 
     will see the passage of the ``Udall bill for Parkinsons''.
       Thank you for doing all that you are, to help us ``kick 
     Parkinsons in the ass''.
     Maryhelen Davila.
                                                                    ____

                                      Kingwood, TX, April 8, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: Thank you so much for your support and 
     concern for the Parkinson's disease community. I have 
     suffered with PD for 22 years. My hopes for a cure have been 
     raised and dashed on several occasions. Without adequate 
     funding PD will dash the hopes of millions of American as the 
     baby boomer generation approaches the age when PD typically 
     strikes.
       Unless you experience if you can't know how awful this 
     disease is. Day after day it takes away the very fiber of who 
     you are, what you might be and what you might do for society 
     your family and yourself. At the age of 52 I can no longer be 
     counted on to perform even the basic duties of life for 
     myself. Wheelchairs, walkers, hospital beds combined with 
     hundreds of dollars of medicine each month are what I count 
     on for mobility. While my husband and family and our support 
     group have been my heroes through these 22 years, their 
     resources are exhausted. The Udall bill gives us all the hope 
     that we need to combat this lousy disease one day at a time 
     until a cure if found.
       Again, thank you for your support for this disease which 
     has been so neglected for so long. In 1817 James Parkinson 
     wrote his paper describing the most prevalent symptoms of 
     this disease. This work 180 years later is still used today 
     to describe in disease. Let 1997 be the year that we change 
     all that. Let it be the year we raise the consciousness of 
     all Americans about the devastation caused by PD and 
     neurological disorders. Let this decade of the brain unravel 
     the mysteries of neurological disorders and let our leaders 
     in Washington pave the way for the cure.
       Do it for Mo, and do it for me. Thanks for listening. This 
     letter was typed by my husband Bob.
           Original signed by,
     Nancy Martone.
                                                                    ____

                                       Manlius, NY, April 1, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: Thank you for your support and 
     leadership on behalf of people with Parkinson's Disease.
       At the age of forty-nine I was stricken with Parkinson's 
     Disease. I managed to continue working till I retired last 
     year at the age of fifty-six. I was earning about $165,000.00 
     per year as a trial attorney.
       My disability and those with early onset of the disease 
     place a heavy financial burden on the Government and the 
     private sector. I am applying for Social Security Disability 
     plus private disability plans. My medical costs are 
     $18,000.00 plus per year and in two years my medical costs 
     will be another burden on the Social Security trust funds. I 
     estimate that the cost of my illness to society will exceed 
     $1,100,000 if I live to age sixty-seven when I would normally 
     retire.
       I also notice on the internet that Parkinson's Disease is 
     striking younger and younger people and that the mean age of 
     diagnosis is now fifty-seven years old. If this trend 
     continues, more people will be receiving Social Security 
     Trust Funds at an early age and fewer people than expected 
     making contributions.
       As I attend support group meetings, I see many people 
     drained of energy, strength and who are unable to articulate 
     their plight. Scientists and researchers express the 
     possibility of new medicines and a cure if more research 
     dollars are invested as proposed by the Parkinson's Bill. 
     Let's apply more research funds to keep people with 
     Parkinson's Disease working longer and leading a healthier 
     life.
       For those who no longer speak for themselves and myself, I 
     wish to thank you for your support.
           Very truly yours,
     A. Dale Severance.
                                                                    ____

                                     Berkeley, CA, March 20, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: I am writing to you regarding the 
     Morris K. Udall Parkinson's Research and Education Bill which 
     is going to be reintroduced in the Senate next month. As you 
     remember the Udall Bill passed the Senate but stalled in the 
     House in 1996. May I take a minute of your time to explain 
     why the Udall Bill is so important to me?
       My wife Frances, now 57, was diagnosed with Parkinson's 
     Disease nine years ago. She is a clinical psychologist and 
     Jungian analyst who still manages to work, but most people 
     stricken with Parkinson's are not so lucky. Unfortunately 40% 
     of the newly diagnosed cases are people under 60 years of 
     age--this disease of the elderly is hitting middle aged 
     people with disastrous results. The disease is incurable and 
     progressive forcing doctors, lawyers, professors, business 
     people, teachers and artists to give up productive lives. I 
     have seen the devastation of families and careers first hand 
     among the many Parkinson's patients I have met. And I have 
     also seen unbelievable courage, intelligence and absolute 
     brilliance as people try to find a way to live with the 
     disease.
       Without further research there is no hope to cure the 
     disease. The current medications mask the symptoms and that 
     is all. The present national research effort is a joke. There 
     is no unified research agenda and the 30 million dollars 
     allotted to the disease (compared 217 million dollars for 
     Alzheimer's and one and a half billion dollars for AIDS) is 
     not nearly enough. There is terrific research potential but 
     no money. The Udall Parkinson's Research and Education Bill 
     will provide the coordination, the research agenda, and the 
     money. Please help us by cosponsoring the bill, or if you 
     cannot cosponsor it, could you at least vote for it? We 
     desperately need your help!
       I would very much like to talk with you about the Bill if 
     you have any questions (510-527-0966 or 
     [email protected]).
           Thanks so much for your help.

                                             Stephen Tobriner,

                               Professor of Architectural History,
     University of California, Berkeley.
                                                                    ____

                                       Orinda, CA, March 29, 1996.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: Thank you for agreeing to introduce 
     the Morris K. Udall Parkinson's Research and Education Act to 
     the House. I am grateful for your efforts on behalf of this 
     bill.
       My closest friend, Frances Tobriner, was diagnosed with 
     Parkinson's Disease when she was 46 years old. She is now 57 
     years old and is courageously managing to work as a 
     psychologist. I have learned that this disease is not limited 
     to the elderly. Young, talented people are vulnerable. There 
     is no cure for this disease and those of us who are able 
     bodied bear helpless witness to the progressive deterioration 
     of those we care about.
       There are many research possibilities that await funding. I 
     believe that the advances in research will help not only the 
     many victims of Parkinson's disease, but other neurological 
     ailments as well. To date there is no unified research agenda 
     and the relatively small amount of money is not enough. The 
     Udall Parkinson's Research and Education Act will help 
     enormously.
       Thank you for your efforts. Know that you have support 
     among constituents.
           Sincerely yours,
     Sue N. Elkind, Ph.D.
                                                                    ____

                                       Merriam, KS, April 3, 1997.
     Re Morris K. Udall Parkinson's Research, Assistance, and 
         Education Act of 1997.

     Hon. John McCain
     U.S. Senate,
     Washington, DC
       Dear Senator McCain: This is to thank you and Sen. Paul 
     Wellstone for taking the

[[Page S2919]]

     lead in reintroducing the Udall bill in the 105th Congress, 
     as well as the many other Senators who are already supporting 
     the bill.
       A stepped-up effort in research and coordination of that 
     research means added hope for me and my family that a 
     possible cure may be found in time to help me. You see, I was 
     diagnosed with Parkinson's Disease at the age of 44, nearly 
     13 years ago. It was only two years after my marriage to my 
     wonderful husband, who has stood by me ``in sickness'' much 
     sooner than we ever imagined. I managed to follow through on 
     a long-term project, as President of a Kansas City group 
     which established a 100,000-watt FM community radio station 
     in 1988 after 11 years of effort. I kept up with the station 
     and other community interests and part-time teaching pretty 
     much full force until 1990, but since then I have had to cut 
     back more and more. You can't imagine how grateful I am for 
     access to the internet (my husband's idea) which re-
     established my ability to connect to the world.
       My husband who is a community college teacher of 29 years 
     has had to take on domestic duties I once did. His daughter, 
     4 when we married, never remembers when I was a normal, 
     active person. And my aging parents help drive me to the 
     doctors, as my right side is too weak most of the time to 
     allow me to push the gas pedal.
       This disease CAN go the way of polio, tuberculosis, small 
     pox and others--GONE. Maybe not for me, but surely for the 
     thousands of millions who don't yet know they are at risk for 
     it.
           Sincerely,
     Barbara Blake-Krebs.
                                                                    ____

                               East Brunswick, NJ, March 31, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: Thank you for introducing the Morris 
     Udall Bill for Parkinson's Disease Research. I will make a 
     special trip to Washington on April 9, 1997 to be present at 
     your introduction.
       In 1946 my grandfather, Benjamin Miller, died of 
     complications from bedsores and infection as a result of 
     Parkinson's Disease. He was forced to live with 
     uncontrollable tremors, locked rigid muscles, loss of all 
     motor function and eventually the total incapacity to care 
     for himself. The last 10 years of his life he was in a 
     totally rigid state and toward the end he could only move his 
     eyes. Contrary to our religious law, my mother agreed to 
     allow his body to be used for research believing that the 
     help it might provide others would more than make up for this 
     breach of tradition. She often said that because of her 
     decision, her father played a part in the development and 
     refinement of L-dopa.
       As fate would have it, my brother is now diagnosed with 
     Parkinson's and while his lifestyle is somewhat better than 
     it might have been 50 years ago, his hideous fate is sealed 
     unless the research continues until a definitive cure has 
     been found.
       Through your foresight to introduce the Udall Bill in the 
     105th congress there is great potential for a breakthrough in 
     Parkinson's disease treatment and ultimately the discovery of 
     a cure.
       Thank you again.
           Sincerely,
     Mrs. Barbara Schirloff.
                                                                    ____

         Rush-Presbyterian-St. Luke's Medical Center, Rush 
           University--Department of Neurological Sciences, Center 
           for Brain Repair,
                                       Chicago, IL, April 2, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: I was very pleased to hear that you 
     have re-introduced the Udall Bill. As a researcher of 
     Parkinson's disease for 25 years, I can assure you that the 
     bill is timely and that the money will be well spent if the 
     bill is passed. I have witnessed the revolution in this field 
     from the early years of levodopa through the discovery of the 
     neurotoxin MPTP, the implantation of adrenal tissue and now 
     pallidotomy and neural grafting. They have been exciting and 
     productive times and quite frankly, it has just plain been 
     fun doing the work and actually seeing it impact the lives of 
     our patients.
       Currently, my laboratory is working on the mechanisms 
     responsible for the neuroprotection that appears to be 
     occurring with the drug pramipexole. Although the drug itself 
     appears to offer the PHD patient a new and very effective 
     addition to the antiparkinson arsenal, the more interesting 
     aspect of our research is that the drug appears to be turning 
     on the production of a new trophic molecule that has the 
     potential to reverse the neurodegenerative process. We are 
     currently trying to isolate this protein so that it can be 
     tested. Our lab has also recently discovered important 
     signals that influence the development of DA neurons (which 
     die in PD). We can now take so-called progenitor cells and 
     convert them into DA cells from grafting. If we are 
     successful at doing this in human cells, we would be able to 
     provide the world with adequate tissue for grafting on demand 
     and thereby totally bypass the abortion issue since cells 
     from only one abortion could be expanded in the lab to serve 
     the needs of all transplant centers. Finally, we are also 
     trying to determine in humans the cause for levodopa induced 
     hallucinations. We know nothing about this phenomenon except 
     that it is the number one cause for patients being placed in 
     nursing homes and once PD patients enter a nursing home they 
     generally die there.
       As you will hopefully recognize, my laboratory is very 
     vested in the treatment and management of PD. Our approach to 
     this disease is, we feel, novel and appropriate to the 
     current status of knowledge in this field. We are not 
     restricted by ideas. We are restricted by lack of funds. I am 
     not at all reluctant to ask the government for money for 
     research. Having been in this business as long as I have, I 
     have come to recognize that we in science actually spend our 
     research dollars in a frugal and effective manner. We have so 
     little of it we have to make it last and work effectively. I 
     can therefore assure you that this will not be a ``pork'' 
     project but will actually result in the desired and intended 
     effects. I therefore thank you for your efforts to increase 
     funding for my field. Even though I don't necessarily agree 
     with the notion of legislative earmarking for research 
     dollars, PD is a disease where throwing adequate funding at 
     it will have a tremendous impact and likely reduce health 
     care costs dramatically.
       If I can ever be of any help to you in your efforts to make 
     this bill a reality or if you simply need background 
     information, please feel free to contact me. Again, thanks 
     for your help.
           Sincerely,
                                             Paul M. Carvey, Ph.D.
         (Associate Professor of Neurological Sciences and 
           Pharmacology Director, Neuropharmacology Research 
           Laboratories).
                                                                    ____



                                              Redwood City, CA

                                                    April 3, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: I am so grateful that you are 
     sponsoring the Udall Bill. I pray that it will pass. We (I am 
     a member of the Parkinsn (sic) Listserv) have been asked to 
     catalog our symptoms for you, so here goes: I was diagnosed 
     with Parkinson's 6 years ago after progressive weird symptoms 
     which I did not realize were significant, such as loss of 
     ability to wash my hair with my left hand, difficulty 
     shuffling and holding cards when I play bridge, a couple of 
     episodes of feeling like I was walking underwater, it was so 
     hard to move; I was diagnosed immediately when seen by a 
     neurologist and put on medication which gave me strange 
     twisting motions of one of my feet. We lowered the dosage. 
     The dyskinesia went away, but the medicine supposedly has a 
     tapering off of effectiveness. So far, it works. I can once 
     again wash my hair with my left hand thanks to the medicine. 
     My illness is progressing, not too fast, but the changes I've 
     had to make are accumulating: walk one mile instead of three, 
     cut back on activities (dropped out of a bridge group, buy 
     instead of make pies, etc., don't crochet or paint--doesn't 
     seem worth the effort) great difficulty in doing up buttons, 
     loss of strength, tire easily, not able to `write' legibly, 
     nor be heard by most people when I speak (young people can 
     usually hear me), have difficulty standing up from chairs, 
     usually can't taste or smell, though I can now and then which 
     makes me impatient for THE CURE, knowing that all is 
     apparently not lost, just somehow not available. I am 
     terribly worried about inability to get long term care health 
     insurance. Nobody will take me and I dread the effect on my 
     husband if he has to spend everything to take care of me. I 
     am blessed with a wonderful, caring husband, who never 
     complains about my increasing dependency on him.
       Bless you for what you have given your country.
           Sincerely,
     Mrs. Elizabeth Southwood.
                                                                    ____



                                    The Parkinson's Institute,

                                     Sunnyvale, CA, April 7, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC
       Dear Senator McCain: Thank you for your unflagging support 
     of the Udall Parkinson's Research bill. I am writing today to 
     explain why this bill is so important to me, to my colleagues 
     in research and clinical care, and to the patients and 
     families who suffer from Parkinson's disease and other 
     movement disorders.
       I have been a practicing neurologist for more than 25 years 
     and have specialized in Parkinson's disease care and research 
     for the last 15 years. As a scientist in close touch with the 
     international research community in the field of 
     neurodegenerative diseases, I see tremendous potential in a 
     dozen scientific directions for finding a cure for 
     Parkinson's disease within the next decade. That is not a 
     statement I make lightly, nor is it a statement that can be 
     applied across the board to the diseases of aging. Instead, 
     it is based on a careful assessment of the technologies that 
     are open now and to the new technologies opening daily to the 
     scientists who specialize in movement disorders.
       As a physician who sees only patients with Parkinson's 
     disease and related movement disorders--some of which are 
     even more devastating--I realize that every patient I see is

[[Page S2920]]

     under a kind of death watch. Their disease is inexorably 
     progressive; there is no cure; and even the gold standard of 
     medications available cannot control symptoms indefinitely. I 
     have learned, as all physicians must learn, to achieve a 
     certain detachment from the inevitability that faces my 
     patients, but it remains a constant trial to look at these 
     individuals and know that my armamentarium is so limited. 
     Part of the way to deal with this challenge, both for 
     physician and patient, is to take comfort in the fact that 
     there is enormous hope through the efforts of the researchers 
     in my own laboratory and in similar institutions around the 
     world.
       What is needed to take advantage of the new technologies 
     and the enormous pool of talented investigators waiting to 
     use them is to make them available to a much larger number of 
     laboratories; to increase the probability that the critical 
     breakthroughs will occur sooner rather than later. No one 
     laboratory can travel every possible avenue of investigation 
     no matter how impressive their equipment and no matter how 
     many bright young postdoctoral fellows are on staff. Rather, 
     we must seek to multiply the approaches to the puzzling 
     problems that still face us by utilizing the different 
     insights, experience, and research philosophies of a variety 
     of laboratories across the country at academic medical 
     centers, at NIH, and in independent research institutes like 
     our own.
       Ultimately, that takes money and that is where we turn to 
     the Congress for help directed specifically to Parkinson's 
     disease. You know, I'm sure, of the discrepancies in research 
     funding per patient between Parkinson's disease and other 
     disorders. The message I want to send to you today is that 
     research dollars for movement disorders will not be thrown 
     into a black hole of hopelessness, but invested in a national 
     program with tremendous hope for the future.
           Sincerely,
                                        J. William Langston, M.D.,
     President.
                                                                    ____

         APDA Parkinson's Disease Information & Referral Center at 
           the University of Arizona,
                                        Tucson, AZ, April 7, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: We are writing to tell you how 
     grateful we are that you have taken on the role of lead 
     republican sponsor in the Senate for the Morris K. Udall bill 
     for Parkinson's Research. There is tremendous support for 
     this bill in Arizona, not only among Parkinson's patients and 
     their family members, but among an ever-widening circle of 
     physicians, scientists and thoughtful members of the general 
     public. It is clear that research holds the key to improved 
     treatments--even a cure--for Parkinson's disease. Only 
     through research will we find a way to reduce the human 
     suffering and economic burden of this terrible illness.
       In Arizona we have taken a special interest in the Udall 
     bill, partly because it is our state which Mo Udall served so 
     well, partly because our state's attractiveness as a 
     ``retirement'' state means we have a higher proportion of 
     residents in the age range most at risk for PD, and partly 
     because several of our state's medical institutions--the 
     University of Arizona College of Medicine in Tucson, the 
     Barrow Neurological Institute in Phoenix, and the Mayo clinic 
     in Scottsdale--already oversee extensive Parkinson's research 
     programs.
       Members of the Arizona Chapter of the American Parkinson 
     Disease Association (APDA) and the staff of its associated 
     Information & Referral Center at the University of Arizona 
     have worked hard to educate Arizona residents about 
     Parkinson's disease and the promise of Parkinson's research. 
     The recent Agenda 97 symposium at the University of Arizona 
     brought together Parkinson's researchers, advocates and 
     government officials for a public forum. The outstanding 
     efforts of the APDA committee Arizona Parkinson's Advocates, 
     led by Bob Dolezal, have made the Mo Udall bill a popular 
     cause throughout the State.
       We applaud your efforts and support you one hundred 
     percent. Thank you again for leading the way to passage of 
     the Udall bill in 1997.
           Sincerely,
     Erwin B. Montgomery, Jr., MD,
       Medical Director, APDA Information & Referral Center at the 
     University of Arizona.
     Cynthia A. Holmes, PhD,
       Coordinator, APDA Information & Referral Center at the 
     University of Arizona.
                                                                    ____

                                    Princeton, NJ, March 31, 1997.
     Hon. John McCain,
     U.S. Senate,
     Washington, DC.
       Dear Senator McCain: Your dedication to bring about the 
     reintroduction of the Morris K. Udall Parkinson's Disease 
     Research and Education Act is most appreciated. The bitter 
     sweet partial victory at the end of the 104th Congressional 
     session was difficult to accept.
       To Americans suffering from this hideous disease, the issue 
     is so clearly defined: there are 1 to 1.5 million people 
     struck with a disease that costs the government 6 billion 
     dollars annually to maintain status quo; whereas an annual 
     investment of 100 million dollars for research would yield a 
     net savings of $124,500,000,000 in five years based on the 
     forecast of eminent scientists who predict major advances in 
     the treatment of or even a possible cure for Parkinson's 
     disease.
       It is with this great anticipation that I face my 17th year 
     living with the disease. During the last number of years, 
     managing my daily minimal activities have become more and 
     more difficult. Since I am only 55 years old, I still have a 
     window of opportunity to re-enter the world of participation 
     rather than inaction. Currently my life revolves around 
     frantically attempting to accomplish somethings during the 
     infrequent and much too short periods of time that my 
     medication kicks in.
       I must believe that with your leadership and guidance the 
     Udall bill will make its perileous journey through the Halls 
     of Congress and will gain enough bi-partisan support for 
     passage and thus insure more adequate research and 
     development funding. For those 50,000 People with Parkinson's 
     who received their diagnosis during this past 12 months and 
     for my own salvation, I join you and your staff in an all-out 
     effort to guarantee the passage of the new Udall bill.
           Sincerely,
                                                 Margaret Tuchman.
                                 ______