Permalink
Cannot retrieve contributors at this time
This commit does not belong to any branch on this repository, and may belong to a fork outside of the repository.
325 lines (290 sloc)
19.7 KB
This file contains bidirectional Unicode text that may be interpreted or compiled differently than what appears below. To review, open the file in an editor that reveals hidden Unicode characters.
Learn more about bidirectional Unicode characters
| <HTML> | |
| <HEAD> | |
| <META HTTP-EQUIV="Content-Type" CONTENT="text/html; charset=iso-8859-1"> | |
| <META NAME="GENERATOR" CONTENT="Mozilla/4.03 [en] (Win95; U) [Netscape]"> | |
| </HEAD> | |
| <BODY TEXT="#000000" BGCOLOR="#FFFFFF" LINK="#0000EE" VLINK="#551A8B" ALINK="#FF0000"> | |
| <IMG SRC="images/3about.gif" NOSAVE HEIGHT=72 WIDTH=389><MAP name="mapped_image1"><AREA shape="rect" coords="38,11 115,35" href="aboutpdf.htm"><AREA shape="rect" coords="115,11 196,35" href="grants.htm"><AREA shape="rect" coords="196,11 279,35" href="giving.htm"><AREA shape="rect" coords="279,11 358,35" href="publicat.htm"></MAP><BR> | |
| <IMG SRC="images/2about.gif" NOSAVE BORDER=0 USEMAP="#mapped_image1" HEIGHT=42 WIDTH=389> | |
| <TABLE CELLPADDING=6 COLS=1 WIDTH="480" > | |
| <TR> | |
| <TD><I><FONT FACE="Times New Roman,Times"><FONT COLOR="#000099"><FONT SIZE=+2>About | |
| the Parkinson's Disease Foundation...</FONT></FONT></FONT></I> | |
| <BR><FONT FACE="Times New Roman,Times">The Parkinson's Disease Foundation | |
| (PDF) was founded in 1957 to encourag</FONT>e and promote research into | |
| Parkinson's disease, a chronic, degenerative neurological disorder that | |
| exhibits itself in such symptoms as tremor, stiffness and slowness of movement. | |
| Although many strides have been made over the past four decades in the | |
| management of the disease--beginning with the discovery of levodopa in | |
| the 1960s, in which the Foundation played an important role-- its cause | |
| and cure continue to elude us. | |
| <P>The founder was William Black, a New York City businessman. His gift | |
| of $5 million to Columbia University to create a research building--plus | |
| an additional $1 million to create an endowment for the foundation itself--was | |
| at the time the largest gift ever made to Columbia by a living donor. Under | |
| the terms of the deed of gift, the offices and laboratories of the Parkinson's | |
| Disease Foundation are housed rent-free at the Columbia Presbyterian Medical | |
| Center. This subsidy, along with interest on the Foundation's bank accounts, | |
| underwrite most of the Foundation's administrative expenses. This in turn | |
| means that more than 95 cents of each donated dollar goes to the support | |
| of the Foundation's medical research, education and public information | |
| programs. | |
| <P>Today, the Foundation is one of the main forces in America providing | |
| financial support for high-caliber basic research and educational support | |
| for families with Parkinson's and strategic leadership for greater public | |
| recognition of the crucial need to devote intellectual and financial resources | |
| to the solution of this terrible condition that afflicts 500,000 to one | |
| million Americans and more than 10 million other individuals around the | |
| world. Its work is in three main areas, as follows: | |
| <P><FONT COLOR="#000099"><FONT SIZE=+1>(1) Leadership in the Present. </FONT></FONT>Support | |
| of the Center for Parkinson's Disease and Other Movement Disorders at the | |
| Columbia Presbyterian Medical Center. The center is recognized as one of | |
| the world's leading centers of clinical and basic research into the causes, | |
| management and cure of Parkinson's disease. From the development of Levodopa | |
| in the late 1960s through to studies of the efficacy of neural transplants | |
| in the late 1990s, the center has been involved in virtually every major | |
| development in basic science and drug development in Parkinson's disease | |
| and other movement disorders, including "Parkinson's- Plus" disorders, | |
| dystonia and Huntington's disease. | |
| <P>The center has a core staff of 10 clinician- scientists (all of whom | |
| have MDs with specialty training in neurology and several of whom have | |
| PhDs or extensive experience in the basic sciences); a group of five to | |
| seven post-doctoral fellows from different parts of the United States and | |
| the world, most of whom return to assume leadership positions in their | |
| home towns and countries; four experienced nurse-clinicians, who run the | |
| clinical trials of new medications and other research projects, including | |
| the Foundation's Brain Bank; and a professional staff of laboratory technicians, | |
| genetics counselors and administrative personnel. The Center also has formal | |
| and informal links to surgical and epidemiological research in other parts | |
| of the university system, including the Department of Neurosurgery and | |
| the Gertrude H. Sergievsky Center, which sponsors studies of epidemiologic | |
| approaches to the study of neurodevelopmental disorders. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+1>(2) Leadership for the Future.</FONT><I><FONT SIZE=+2> | |
| </FONT></I></FONT>Preparing Tomorrow's Leaders through a National Program | |
| of Research Grants and Postdoctoral Fellowships. In addition to its direct | |
| support of one of the world's leading centers of Parkinson's science, the | |
| PDF contributes to the wider field of Parkinson's research through two | |
| highly competitive and scientifically-refereed awards programs. One of | |
| these is of research grants to institutions; the other, of fellowships | |
| to young scientists. | |
| <P>Since the Foundation's inception four decades ago, this role has been | |
| central to its mission. At no time was this more evident than in November | |
| of 1996, with the announcement, in an article appearing in the journal | |
| Science, of the discovery of a gene for Parkinson's disease. Thirty-five | |
| years earlier, Dr. Roger DuVoisin, then a promising young scientist and | |
| today the senior member of the team of authors for the Sciencearticle, | |
| assumed his position as the PDF's first postdoctoral Research Fellow. This | |
| year, the Foundation accepted applications for the research grants program | |
| from 24 institutions in 15 states and provinces throughout the United States | |
| and Canada. From this list, five were selected competitively by a committee | |
| of senior scientists from Columbia to receive research grants of up to | |
| $35,000 a year. | |
| <P>The committee's main criteria were scientific excellence and the potential | |
| for significantly expanding our knowledge about Parkinson's in important | |
| and practical ways. Each of the projects selected shows the potential not | |
| only for enhancing the science of Parkinson's but also for leading into | |
| a proposal for longer-term and larger support from the National Institutes | |
| of Health (NIH), the premier source of research funding in America. The | |
| other prong in the Foundation's program to nurture and support young scientists | |
| is the postdoctoral fellowship program. Last year, the Foundation supported | |
| eight such awards. The young doctors receive a modest stipend and some | |
| of the best and most comprehensive training in movement disorders available | |
| in the world. | |
| <P>One measure of the success of this program is where the fellows go afterwards. | |
| At this writing, almost every major movement disorders center in the New | |
| York metropolitan area--Mount Sinai Medical Centers, Beth Israel Medical | |
| Center, North Shore Hospital and others--is headed by a graduate of this | |
| program. A companion to the postdoctoral fellows program is the Foundation's | |
| nationwide program of summer fellowships. Last year, the Foundation sponsored | |
| 12 such awards at as many institutions, including Brown University (Providence, | |
| RI); Rush-Presbyterian-St. Luke's Medical Center and the University of | |
| Chicago (Chicago, IL); Ohio State University; Harvard University (Cambridge, | |
| MA); University of Miami (Miami, FL); University of California (Irvine, | |
| CA); University of Virginia (Charlottesville, VA); Yale University (New | |
| Haven, CT); the University of Rochester (Rochester, NY); Vanderbilt University | |
| (Nashville, TN); and the University of Michigan (Ann Arbor, MI). | |
| <P>Many of the PDF's contributions in this area over the years have been | |
| in behalf of leading institutions abroad. Among the foreign institutions | |
| which have sent fellows to Columbia over the years have been the Tianjin | |
| School of Medicine (China); Hadassah Medical Center (Israel); University | |
| of London (U.K.); University of Warsaw (Poland); University of Ottawa (Canada); | |
| University of Madrid (Spain); University of Milano (Italy); Yamagata University | |
| (Japan); University of Beograd (Croatia); University of Brussels (Belgium); | |
| University of Bangalore (India)); Agios Oavlos Hospital (Greece); Haciteppe | |
| University (Turkey); and Hospital de Especialidades (Mexico). | |
| <P><FONT COLOR="#000099"><FONT SIZE=+1>(3) Leadership in the Community.</FONT><I><FONT SIZE=+2> | |
| </FONT></I></FONT>Informing People with Parkinson's and their Families; | |
| Educating the Public and the Professions; Advocating for the Cause The | |
| PDF's long-term goal may be the support of Parkinson's research but its | |
| day-to-day mailbag and fax and telephone traffic is filled with calls for | |
| help from patients and Parkinson's families around the country. More than | |
| 25 calls on average come in every business day over our toll-free telephone | |
| lines from patients and their families--most typically, people who have | |
| been recently diagnosed with Parkinson's and who are crying out for help: | |
| information about the disease, referrals to physicians and assistance with | |
| questions such as where to find social services, where to get health, life | |
| and long-term-care insurance and how to combat job discrimination. | |
| <P>The Foundation takes this part of its mission very seriously, through | |
| publications, professional education, public advocacy and -- to the extent | |
| time and professional resources permit -- personal consultation. Our regular | |
| educational activities include: | |
| <UL> | |
| <LI> | |
| <FONT COLOR="#000099"><FONT SIZE=+1>A quarterly newsletter</FONT></FONT>, | |
| covering everything from medical news to support group successes to fundraising | |
| activities. The content is varied but rooted in a single theme: what do | |
| people with Parkinson's disease, and their families, want--and need--to | |
| know? We tell them of the medications just released (and those still in | |
| the pipeline); of the activities of the established support groups (and | |
| those that are just forming); of the scientific achievements of the mature | |
| scientists (and the younger ones coming along); of the few leadership gifts | |
| (and the many, equally appreciated, smaller ones). We share tips from people | |
| who have struggled with, and mastered, life with Parkinson's. We answer | |
| questions from those who feel anxious and needing information. Above all, | |
| we try to convey two simple messages: you, the individual or family who | |
| has been diagnosed with Parkinson's, are not alone ... and your condition | |
| is not a sentence of death, but a redefinition of life. To order the latest edition of the newsletter, <a href="./publicat.htm">click here</a>.</LI> | |
| <LI> | |
| <FONT COLOR="#000099"><FONT SIZE=+1>Publications and audiovisual materials</FONT></FONT>, | |
| including descriptions of the medical aspects of the condition; tips and | |
| hints on how to handle it in the home and in the workplace; programs of | |
| exercise and nutrition; and a series of fact sheets on specific aspects | |
| of the disease and its management. - a physician referral service. The | |
| difficulty of diagnosis in Parkinson's disease makes it especially important | |
| for patients and their families to have access to physicians experienced | |
| in the diagnosis and treatment of this condition and other movement disorders. | |
| Few general physicians, and not all neurologists, are fully conversant | |
| with a condition that may constitute less than five percent of their practice. | |
| The role of the PDF here is to maintain files of physicians who are known | |
| to have a special interest and expertise in Parkinson's disease and who | |
| are interested in -- and available for --new patients. Not all scientists, | |
| including some of the most eminent, are available to the average patient. | |
| Our task is to identify those who are ... and to make sure that this list | |
| is available to those who reach out to us for help. To order some of our publications, <a href="./publicat.htm">click here</a>.</LI> | |
| <LI> | |
| <FONT COLOR="#000099"><FONT SIZE=+1>In-service training and education for | |
| the professions.</FONT></FONT> Our clinical nurse specialist is available | |
| to meet requests from professional and lay groups--social workers, community | |
| service people, nurses, even physicians--for up-to-date information on | |
| the science and practice of Parkinson's disease management. Last year alone, | |
| we provided more than 25 such sessions, at no charge.</LI> | |
| <LI> | |
| <FONT COLOR="#000099"><FONT SIZE=+1>Support for support groups.</FONT></FONT> | |
| The Foundation has corresponding relationships with more than 500 Parkinson's | |
| support groups in more than 40 states. We circulate news and information | |
| and answer queries as needed. We also recognize excellence in performance | |
| by individual support groups through the annual Dorros awards. Named for | |
| Donna and the late Sidney Dorros, legendary leaders in the Parkinson's | |
| support group movement, the program offers two categories of award: one, | |
| for groups run by a health and social services professional and the other, | |
| for groups run entirely by volunteers.</LI> | |
| <LI> | |
| <FONT COLOR="#000099"><FONT SIZE=+1>Raising public awareness.</FONT></FONT> | |
| The Foundation has an active media relations program, fielding requests | |
| for information from the mass media and arranging media appearances for | |
| scientists and other experts in Parkinson's disease. Most recently, we | |
| have inaugurated a Parkinson's Science News Bureau, designed to provide | |
| serious medical and science journalists with information and analysis on | |
| such topics as current research, emerging therapies, developments in care-giving | |
| and the demographics, economics and culture of Parkinson's disease and | |
| its management.</LI> | |
| <LI> | |
| <FONT COLOR="#000099"><FONT SIZE=+1>Public funding.</FONT></FONT> The role | |
| of the private sector is certainly crucial in raising private monies and | |
| building a national constituency for support of Parkinson's disease research. | |
| In the long term, however, the success of that research will depend upon | |
| sufficient support from public sources, mostly through the National Institutes | |
| of Health. In this connection, the Foundation is an active collaborator | |
| with other organizations in building and sharing the case for increased | |
| federal support. Our main vehicle for this is the Washington (and California)-based | |
| Parkinson's Action Network, which we support financially and in other ways.</LI> | |
| </UL> | |
| <I><FONT COLOR="#000099"><FONT SIZE=+2>The PDF: A Chronology...</FONT></FONT></I> | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1957</FONT></FONT> Parkinson's Disease | |
| Foundation, the oldest charitable group in the nation that is dedicated | |
| exclusively to finding the cure and providing the care for Parkinson's | |
| disease, was founded by William Black, a New York City businessman and | |
| philanthropist. Dr. Melvin Yahr named as executive director and scientific | |
| director. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1962</FONT></FONT> Dr. Roger Duvoisin | |
| appointed ats PDF's first postdoctoral fellow. (Thirty-five years later, | |
| Dr. Duvoisin was senior member of the team that discovered the first gene | |
| accounting for some cases of PD). Dr. Duvoisin develops the Columbia Rating | |
| Scale (the forerunner of the Unified Parkinson's Disease Rating Scale (UPDRS), | |
| developed by Dr. Stanley Fahn and colleagues in 1987), for calibrating | |
| the severity of Parkinson's disease. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1965</FONT></FONT> Columbia University | |
| opens the PDF laboratories on the third floor of the William Black Building | |
| at the Columbia Presbyterian Medical Center (CPMC). PDF sponsors its first | |
| two scientific conferences: one on the science of the thalamus and the | |
| other on the biochemistry and pharmacology of the basal ganglia. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1967</FONT></FONT> Dr. Margaret | |
| Hoehn, PDF postdoctoral fellow, and Dr. Yahr publish seminal paper on the | |
| natural history of Parkinson's disease. This included the benchmark "Hoehn | |
| and Yahr staging system" for identifying the severity of PD. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1969</FONT></FONT> Dr.Yahr and PDF | |
| colleagues publish the results of the first double-blind trial of levodopa, | |
| the first medication to relieve the symptoms of Parkinson's disease. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1970</FONT></FONT> PDF initiates | |
| the James Parkinson award, named for the English physician who first described | |
| the disease that now carries his name. The honoree is Dr. Arvid Carlsson, | |
| an pioneer in the science of dopamine. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1971</FONT></FONT> PDF initiates | |
| program of summer fellowships for medical students, to encourage talented | |
| your scientists to enter the field of Parkinson's disease research. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1973</FONT></FONT> Second James | |
| Parkinson awards made to Dr. Oleh Hornykiewicz, the research scientists | |
| who discovered the link between striatal dopamine deficiency and PD. Dr. | |
| Stanley Fahn named as scientific director of the PDF. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1978</FONT></FONT> Dinah Tottenham | |
| Orr named as executive director of the PDF. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1981</FONT></FONT> PDF and Columbia | |
| University sponsor scientific symposium on experimental therapeutics for | |
| Parkinson's disease. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1982</FONT></FONT> PDF establishes | |
| the H. Houston Merritt Sabbatical Fellowships for visiting scientists, | |
| named for the renowned neurologist and first president of the Foundation. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1983</FONT></FONT> PDF stages first | |
| "open house" for people with Parkinson's and their families. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1984</FONT></FONT> Dr. Fahn, in | |
| association with Dr. Ira Shoulson of the University of Rochester, found | |
| the Parkinson Study Group, a consortium of leading research centers assembled | |
| to conduct multi- center clinical trials of new drugs. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1987</FONT></FONT> On the occasion | |
| of nits 30th anniversary, the PDF sponsors a symposium immediately before | |
| the annual meeting of the American Academy of Neurology. Dr. Melvin Yahr | |
| and J.William Langston, a discoverer of the neurotoxicity of MPTP, receive | |
| the third and fourth James Parkinson awards. At the same time, the Foundation | |
| initiates the Donna and Sidney Dorros awards, recognizing excellence in | |
| Parkinson's support groups. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1988</FONT></FONT> PDF, along with | |
| the United Parkinson Foundation in Chicago, create a Junior Faculty Award. | |
| Purpose is to provide support to young scientists for Parkinson's research. | |
| 1989 Foundation creates position of nurse-specialist to help patients with | |
| their question and provide professional leadership to support groups and | |
| patient and family education. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1994</FONT></FONT> Several Parkinson's | |
| organizations team up to create the Parkinson's Unity Walk, a collaborative | |
| fundraising effort based in New York City. The proceeds go to each of the | |
| participating organizations. The Foundation sponsors the first symposium | |
| on the "quality of life" in Parkinson's disease. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1995</FONT></FONT> Foundation's | |
| annual benefit dinner-dance features Muhammad Ali and Madonna. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1996</FONT></FONT> Ms. Orr retires | |
| as executive director; Mr. Robin Elliott appointed to replace her. | |
| <P><FONT COLOR="#000099"><FONT SIZE=+2>1997</FONT></FONT> PDF sponsors | |
| "Frontiers in Parkinson's Disease," a symposium celebrating its 40th anniversary. | |
| Fifth James Parkinson award given to C. David Marsden, explorer of the | |
| etiology, biochemistry, physiology, imaging, genetics, animal models and | |
| therapeutics of PD. In this year also, PDF inaugurates the Parkinson's | |
| Disease Foundation lectureship at the annual meeting of the American Academy | |
| of Neurology. First honoree turns out to be Dr. Fahn. The Foundation participates | |
| with other Parkinson's advocacy groups in achieving Congressional passage | |
| and Presidential approval of the Morris K. Udall Parkinson's Disease Education | |
| and Research Act, which authorizes up to $100 million in expenditures through | |
| the National Institutes of Health for research on Parkinson's disease. </TD> | |
| </TR> | |
| </TABLE> | |
| | |
| </BODY> | |
| </HTML> |