PARKINSON'S DISEASE FOUNDATION
commitment. community. impact.
Annual Report 2010
The mission of the Parkinson's Disease Foundation速 (PDF速 ) is two-fold: to understand and find the cure to Parkinson's disease and related movement disorders; and, for as long as this search continues, to ensure that those individuals and families who live with Parkinson's are able to achieve and maintain the best possible quality of life.
TABLE OF CONTENTS 2
Letter from Leadership
PDF Advances in 2010
Donors: PDF Champions
Donors: 2010 Listing
Dear Friend of the Parkinson’s Disease Foundation: We are often asked: How would you describe PDF to someone you had just met in an elevator, as you journey from the ground to the 15th floor, where our offices are? Okay, admittedly this is a bit of a New York City-oriented question (after all, we have more 15th floor offices here than do most cities), but you get the point. To close in on the question, we decided to frame this year’s annual report around three words that we feel capture the essence of PDF’s spirit, strategies and successes — and can be uttered in a brief elevator ride. Here they are: Commitment. Community. And Impact. First, Commitment. The very word calls out the heart of PDF’s story: more than a half-century of delivering on the promise of our founder, William Black, to help accelerate the cure for Parkinson’s disease (PD) by supporting research of the highest caliber and relevance to the needs of the people who live with the disease. This commitment will be secure until that day when we are able, joyfully, to close the curtains on the Parkinson’s story. This commitment was evident in 2010 in our support of Parkinson’s researchers at several major university centers in the United States and beyond. We do not tell these scientists what to do; we ask them for their best ideas and then provide, through rigorous peer review, a selection process that centers on just three questions about their proposed work. One question is, is it the best science? The second is, does it add materially to what we already know? And the third is, will it be relevant to understanding and stopping Parkinson’s disease? Our second word is Community. Actually, we have several communities. The first is the women and men who live with Parkinson’s, along with their partners, sons and daughters, and friends. We interact with these folks in a variety of ways. One is including them as advisors for our own programs — primarily though our People with Parkinson’s Advisory Council, the first of its kind in the Parkinson’s community. Another one is providing them with authoritative and timely information — through our website, our publications and educational meetings, both in-person and online. A more recent initiative is engaging them in the process of Parkinson’s clinical research, primarily through our Parkinson’s Advocates in Research (PAIR) program which “pairs” talented patient advocates with real-world challenges in clinical research.
PDF Annual Report 2010
Another community is the doctors and scientists who conduct the research and provide the medical services for people with Parkinson’s. We serve this community in various ways — from screening clinicians for our physician referral list, to supporting the work of the Parkinson Study Group, the nation’s leading consortium of Parkinson’s researchers. The third word is Impact. As with the other two words, the idea of “impact” has more than a single side to it. In the context of limited resources, this means that we must carefully choose the projects that we take on for their likely impact. This in turn means that we do not duplicate activities that are being done, or have been done, by other organizations. For example, the online nursing education course that we led is the first of its kind ever to have been attempted. So is our Clinical Research Learning Institute, which trains people with Parkinson’s to be research advocates. Making an impact also means that we need to continuously evaluate what we do to ensure that it meets community needs, clearly and efficiently. The point is that it is not enough to just have good ideas, strong people or good money behind them; you have to be able to demonstrate that what you are doing actually makes a difference to the communities you serve. What we are saying would be true for any organization, but it is especially true in a not-for-profit where the “bottom line” is so much more than the financial return on investment.
Thank you! We invite you to read this report carefully and critically — whether or not we have the pleasure of seeing you “on the elevator!” Sincerely yours,
Robin Anthony Elliott
Lewis P. Rowland, M.D.
President, Board of Directors
As we like to say in each annual report, nothing of what we do — not the pursuit of our commitment, not the service to our community, and not the certification we make of the impact of the work that we do — would be possible without the help of those who support us financially. At the start of each fiscal year, we must start from scratch to raise the money we need — about $10 million a year — to fund the work that has marked the Parkinson’s Disease Foundation since 1957. To our donors who have helped to make these efforts possible, we extend our deepest gratitude. We hope that you are as proud of the work you have supported as we are to have undertaken it.
The Parkinson's Disease Foundation supports research and ideas that will improve the lives and futures of people touched by Parkinson’s. Because of your support in 2010, PDF was able to accomplish the following:
Funded $5.5 million in Parkinson’s research — including grants to 37 individual investigators, 39 fellows and the scientific teams at three major academic centers — whose creative and novel ideas will bring us closer to finding new treatments and a cure.
Ensured that the findings of Parkinson’s research are accessible to everyone by launching a “What Does it Mean?” news feature and blog entitled, Parkinson’s Insights, both of which provide space to translate research news, offer updates on scientific meetings and feature guest posts by community members.
Distributed 100,000 educational publications and advised, through our National HelpLine, thousands of people with Parkinson’s, family members and health care professionals from all 50 states and six continents, on issues relating to diagnosis, treatment, care partner concerns and more.
Welcomed the participation of our friends online, with 10,000 individuals viewing at least one of six innovative online educational seminars; and thousands more sharing their stories, creative works, photos and videos with each other on PDF.org, Facebook, Twitter, YouTube and Flickr.
5 6 7 8
Expanded our network of PDF Research Advocates to include more than100 individuals who have been trained through the Clinical Research Learning Institute and who are now ready to advance science by bringing their voices to important issues in Parkinson’s research.
Led a community effort to develop an online nursing course, Parkinson’s Disease Across the Lifespan: A Roadmap for Nurses, for which 6,400 nurses have now registered and are learning about the latest in Parkinson’s care.
Showed the world the impact of Parkinson’s through the unveiling of the first Parkinson’s Quilt, featuring panels created by more than 600 people, at the 2nd World Parkinson Congress, in Glasgow, Scotland.
Advocated for a larger recognition of Parkinson’s Awareness Month in April, ensuring that the Parkinson’s community rises to the forefront of the national consciousness, by distributing our message to more than 100,000 people through our Awareness Month toolkit, print and online campaigns and a community t-shirt design contest.
Advanced our research, education and advocacy programs under the advisement of our People with Parkinson’s Advisory Council, now in its fifth year — the first group of its kind in the Parkinson’s community.
Earned a Four-Star Rating from Charity Navigator, once again, making PDF the only Parkinson’s charity to receive both this and the Charity Seal of Approval from the Wise Giving Alliance of the Better Business Bureau (BBB). 5
For more than a half century, the Parkinson's Disease Foundation’s commitment to the Parkinson's community has remained the same — funding research of the highest caliber while providing easily accessible, high quality information to people living with the disease. Since our founding in 1957, PDF has dedicated over $85 million to fund the research of leading scientists throughout the world and has funded over $34 million worth of educational and advocacy initiatives to support people with Parkinson’s, their families and care partners. A New Strategy for Neuroprotection in Parkinson’s Disease In a new analysis of current Parkinson’s
they point out, the development of Parkinson’s is
research, Robert E. Burke, M.D., and his col-
also due to problems with communication, which
leagues at Columbia University, with funding from
takes place through the cells’ axons. Much like
PDF, found that only about 30 percent of a per-
telephone lines downed by a powerful storm, the
researchers say that PD is a storm that disrupts
the proper communication of dopamine in the
died by the time
brain, causing Parkinson’s symptoms before nerve
an individual is
cells completely die.
diagnosed with the disease. An artist’s rendering of the axonal arborizations of a healthy dopamine neuron (left) and of the same, but weakened neuron as it might appear in Parkinson’s disease. A loss of axons can lead to the appearance of Parkinson’s symptoms before the neuron dies.
The new hypothesis — that people newly diagnosed with Parkinson’s may have many more dopamine neurons than previously thought — pro-
vides grounds for optimism that therapies aimed at
with a widely-
protecting these cells can be effective for treating
Parkinson’s. It suggests the value of a new em-
from previous studies that 50-70 percent or more of
phasis on neurorestoration therapies that would
these cells have been lost at the time of diagnosis.
protect neurons by improving the health of axons.
The motor symptoms of Parkinson’s are
Restoring the health of axons may alleviate motor
thought to develop when dopamine neurons die,
symptoms, prevent cell death, and, the authors
but in Dr. Burke’s report, which appeared in the
say, possibly slow PD progression. The scientists
June 2010 issue of Annals of Neurology, he and
caution that the field of understanding mecha-
his colleagues argued that it is more than simply
nisms of axon regeneration and the potential for
cell death that leads to the onset of PD. Instead,
axon regrowth is in its early stages.
PDF Annual Report 2010
Increasing Our Understanding of Cognitive Impairment in Parkinson's Ranging from mild attention difficulties to dementia, cognitive impairment is a debilitating symptom of Parkinson’s. With funding from PDF’s International Research Grants and Fellowship Program, Ryan Walsh, M.D., Ph.D., of the University of Alabama at Birmingham, is using fMRI (functional MRI) imaging to identify the anatomical features underlying cognitive impairment in Parkinson’s and to determine whether there are differences in how peoA cross-sectional view of a healthy brain as imaged using magnetic resonance imaging (MRI). Advanced forms of this imaging technique allow scientists to see changes in the brain that might be associated with Parkinson’s.
ple with or without cognitive impairment respond to dopaminebased medications. The results may lead to imaging biomarkers for evaluating the nature, degree and progression of cognitive dysfunction in Parkinson’s.
Funding Innovative Research that is Unlikely to Secure Funding Through More Traditional Sources With funding from PDF, Gammon Earhart, P.T., Ph.D., of the Washington University School of Medicine, is examining the role of partnered dance in Parkinson’s. This study represents one of the first to examine the effectiveness of a long-term, community-based partnered dance exercise program for individuals with Parkinson’s and one of the first to evaluate their medication. The initial results are promising, suggesting a clear improvement in disease severity (as assessed by the UPDRS, a rating scale used to measure disease progression) in those
People with Parkinson’s receiving instructor feedback during a partnered dance session.
who are exercising. Furthermore, this study suggests that the benefits of six months of exercise were greater than those of just three months of exercise, with benefits maintained at 12 months relative to the six-month time point. This work paves the way for future studies to determine the relative effectiveness of different forms and doses of exercise for people with Parkinson’s and for studies of the mechanisms by which dance may convey benefits.
the effects of exercise by assessing individuals who are off
COMMITMENT 2010 PDF-FUNDED RESEARCHERS PDF is proud to have contributed to the important work of the following scientists. Research Center Teams Columbia University Medical Center Robert Burke, M.D. Lorraine N. Clark, Ph.D. Stanley Fahn, M.D. Lloyd Greene, Ph.D. Elan D. Louis, M.D., M.S. Karen Marder, M.D., M.P.H. Pietro Mazzoni, M.D., Ph.D. Serge Przedborski, M.D., Ph.D. Seth Pullman, M.D. Yaakov Stern, Ph.D.
David Sulzer, Ph.D. Jean Paul Vonsattel, M.D. Cheryl Waters, M.D. Nancy Wexler, Ph.D. Ai Yamamoto, Ph.D.
Rush University Medical Center
Weill Cornell Medical Center
Brandon R. Barton, M.D., M.S. Bryan A. Bernard, Ph.D. Cynthia L. Comella, M.D. Jennifer G. Goldman, M.D., M.S. Christopher G. Goetz, M.D. Deborah A. Hall, M.D., Ph.D. Katie Kompoliti, M.D. Jeffrey Kordower, Ph.D. Kathleen M. Shannon, M.D. Glenn T. Stebbins, Ph.D. Leo Verhagen, M.D., Ph.D.
M. Flint Beal, M.D. Claire Henchcliffe, M.D., D.Phil. Melissa J. Nirenberg, M.D., Ph.D.
Fellowship Awardees James T. Boyd, M.D. University of Vermont PSG/PDF Mentored Clinical Research Award
International Research Grants Awardees Daniel Schneider, M.D. Columbia University Medical Center
Gammon Earhart, P.T., Ph.D. Washington University of Medicine
Khurshida Shahidullah, Ph.D. Weill Cornell Medical College
Tobias Kurth, M.D., Sc.D., and Robert Y. L. Zee, Ph.D., M.P.H. Brigham and Women’s Hospital
Thomas Durcan, Ph.D. Montreal Neurological Institute, McGill University
Alexander Shtilbans, M.D. Columbia University Medical Center
Sheng-Han Kuo, M.D. Columbia University Medical Center
Mary Ann Thenganatt, M.D. Columbia University Medical Center
Era Hanspal, M.D. Columbia University Medical Center
Christina Vaughan, M.D., M.H.S. Rush University Medical Center
Christopher Hess, M.D. Columbia University Medical Center
Aleksandar Videnovic, M.D., M.Sc. Northwestern University Feinberg School of Medicine PDF/AANF Clinician Scientist Development Award
Sachin Kapur, M.D. Rush University Medical Center James Maas, M.D., Ph.D. University of California, San Francisco Markos Poulopoulos, M.D. Columbia University Medical Center
Ryan Walsh, M.D., Ph.D. University of Alabama at Birmingham Maria Xilouri, Ph.D. Biomedical Research Foundation of the Academy of Athens
Leo J. Pallanck, Ph.D. University of Washington David Park, Ph.D.* University of Ottawa Hardy Rideout, Ph.D. Biomedical Research Foundation of the Academy of Athens Antonio Strafella, M.D., Ph.D., F.R.C.P.C. Toronto Western Hospital University of Toronto Christian Wider, M.D.,* and Matthew J. Farrer, Ph.D. CHUV Lausanne and University of British Columbia Cyrus Zabetian, M.D., M.S. VA Puget Sound Health Care System, Seattle Division, University of Washington *Denotes second consecutive year of funding.
In 2010, PDF funded $5.5 million in Parkinson’s research — including grants to 37 individual investigators, 39 fellows and the scientific teams at three major academic centers. 8
PDF Annual Report 2010
Providing Up-to-Date Information and Practical Advice for Living with Parkinson’s Recognizing the on-going need to provide people with Parkinson's and their families with up-to-date research information and practical advice for living with Parkinson's, PDF continued in 2010 our popular PD ExpertBriefings online educational seminars. This program provided people with Parkinson's around the country, and the world, with first-hand access to the insights of some of those who are at the forefront of Parkinson's research and care. These bi-monthly interactive online programs addressed topics pertinent to the Parkinson’s community including research updates, nutrition and Parkinson’s, legal issues and care partner concerns. Each 60-minute session included a question and answer period and was archived on the PDF website for one year so that individuals could participate from the comfort of their own home, 24 hours a day, seven
give the families of people with Parkinson’s hope for solutions and a chance for a better life. Thank you! Joan S., San Francisco, CA
In 2010, over 10,000 individuals representing all 50 states as well as 22 countries around the world viewed at least one online educational seminar.
days a week.
“PDF’s online programs
At the heart of PDF’s work is the participation of people with Parkinson’s. Through its educational and advocacy programs, PDF offers the tools and resources to empower individuals to become involved, raise awareness and help bring about change.
PAIRing up to Change the Parkinson’s Research Process At PDF, we believe that one way to help accelerate the development of new therapies for Parkinson’s is through “pairing” people with Parkinson’s — trained research advocates — with people in government, science and industry to improve the process that brings us new medicines. Through our Parkinson’s Advocates in
Graduates of the 2010 Clinical Research Learning Institute
Research (PAIR) program, advocates are advancing science by educating their communities about clinical study participation; partnering with industry, academia and government to ensure that the voices of people with Parkinson’s are heard; working with scientists to design, run and review research studies; and serving as formal representatives on local, state and national clinical research review and advisory boards. PDF Research Advocates participate in a three-day Clinical Research Learning Institute. This PAIR training program features leading clinical research experts from academia, government and industry, and former Learning Institute graduates. Coursework includes the science of Parkinson’s disease, the clinical research process and advocacy skills-building — preparing participants to be informed and knowledgeable in their roles as Research Advocates. In 2010, 40 individuals completed the training. Graduates of the Learning Institute work closely with PDF staff and fellow Research Advocates through ongoing education, resource sharing and networking opportunities to strengthen the role that people with Parkinson’s can play in the clinical research process.
PDF Annual Report 2010
Using Professional Expertise and Personal Dedication to Advance Science Just six months after participating in the 2010 Clinical Research Learning Institute, Sue Dubman of Boston, MA, is helping the Parkinson’s community in a way that powerfully leverages her 15 years of professional experience in government, health, information technolSue Dubman
ogy and clinical research. As a PDF Research Advocate, Ms. Dubman is working to solve the problem of data standardization across
Parkinson’s studies through her service with the Coalition Against Major Diseases (CAMD) Critical Path Institute, a nonprofit institute which brings together industry and government agencies to improve the development of new therapies by streamlining data. She has also reviewed new data standards created by the National Institute of Neurological Disorders and Stroke (NINDS) — a branch of the National Institutes of Health (NIH) that funds Parkinson’s research — and has provided her expert feedback on behalf of PDF and the Parkinson’s community.
Researchers and Advocates Recognize Parkinson’s Research Participants In April 2010, a group of PDF Research Advocates, including Frances Waldynski of Chicago, IL, decided to recognize “partners in progress” — individuals from the Chicago area who have participated in trials. The advocates joined forces with local doctors, clinical trial coordinators and PDF staff to organize an educational forum entitled, Partners in Progress: The Essential Role that People with Parkinson's Play in Clinical Research. In addition to honoring research participants, the event brought together over 200 individuals, and helped to raise awareness of the studies taking place in the area.
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In 2010, PDF expanded its network of research advocates to include more than 100 individuals from 36 states.
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Raising Awareness of the Impact of Parkinson’s In 2010, PDF took the lead in advocating for a larger recognition of Parkinson’s Awareness Month, ensuring that the Parkinson’s community rises to the forefront of the national consciousness. In addition to helping the Parkinson’s community coordinate activities in April, PDF distributed its message to more than 100,000 people through its Awareness Month toolkit, print and online campaigns and
“Awareness of Parkinson’s leads to compassion, compassion leads to giving, giving leads to research, and research will lead to a cure.
a community t-shirt design contest.
New York, NY PDF Research Advocate
Arizona Mom Wins PDF’s Parkinson’s Awareness Month T-Shirt Contest In 2010, PDF launched its first Parkinson’s Awareness Month T-Shirt Design Contest, which challenged members of the Parkinson’s community to design a t-shirt incorporating the Parkinson’s tulip and PDF’s trademark colors, yellow and green. Heather Hinrichsen, a 36-year old mom who lives with young onset Parkinson’s disease, decided to give it a try. Her entry — the Fight to Win design — received over 800 of the 1,900 votes, beating out four other finalists. Ms. Hinrichsen said, “I hope that by sharing my story, people will realize that Parkinson’s is not just an older person’s disease. Through the t-shirt, I want to spread the message to everyone to fight Parkinson’s. I plan to fight until I win — I have Parkinson’s, but it doesn't have me!”
Members of PDF’s People with Parkinson’s Advisory Council proudly wear the PDF awareness month t-shirt.
PDF Annual Report 2010
The First Global Quilt for Parkinson’s In 2010, more than 600 people from 16 countries participated in the Parkinson's Quilt Project, the first global quilt project to focus the world's attention on the impact of Parkinson’s and on the continuing urgency to find a cure. Each 2’ by 2’ quilt panel included photos, illustrations and items that expressed the experience of each quilter with Parkinson's. The quilt was displayed for the first time at the 2nd World Parkinson Congress in Glasgow, Scotland in September 2010. To ensure that the quilt continues to raise awareness, PDF is offering sections of the quilt for
“‘Amazing’ is a good word to describe my experience as part of the Parkinson’s Quilt Project. Each panel provides an open window into that quilter’s journey living with or affected by Parkinson’s.
rental and display to the general public in 2011.
Finding a Community Online As social networking websites continue to change the way individuals find information and support, PDF responded in 2010 by expanding its presence on Facebook, YouTube and Twitter. PDF’s online communities on these sites now inLinda Giorgilli
One of these members is Linda Giorgilli, who first signed up for Facebook because she thought it would be a nice way
to connect with friends. However, after finding the PDF Facebook page, she has found the social networking site to be a place where she has been able to share her experience caring for her late father who lived with Parkinson’s. As she watched people “writing” on PDF’s page, seeking advice and sharing their stories with other individuals, Ms. Giorgilli began responding to their inquiries about life with Parkinson’s herself. As Ms. Giorgilli says, “The value of what unfolded with social networking — the power and strength that it gave me to cope with the loss of my father and fight for this cause — is immeasurable.”
clude over 8,000 individuals.
PDF’s diverse programs have a single underlying objective: to fund the most promising ideas that will have a significant impact upon the Parkinson’s community. PDF selects these projects after seeking the input and guidance of experts in the field of Parkinson’s: leading researchers, clinicians, nurses, health care professionals and people living with Parkinson’s. Scientists Discover Key Process that Contributes to Common Form of Parkinson’s Research led by Scott A. Small, M.D., of
new technique called gene expression profiling to
Columbia University with funding from PDF, has
compare which genes were “switched” on or off
identified a molecular pathway — the polyamine
in cells from two adjacent areas of the brain —
pathway — that may explain how Parkinson’s
one affected by PD, the other not. They found that a gene responsible for preventing the accumulation of a certain class of chemicals in the cell, called polyamines, was lower in those people who had Parkinson’s compared to those who did not. The finding of an association between high polyamine levels and PD — if confirmed — may have two potentially important clinical implications. Since polyamines can be measured in blood and in
Advanced magnetic resonance imaging employed by Dr. Small to identify areas of the brainstem affected by PD for further genetic analysis. The yellow line in the brain cross-section shows where in the brain the images on the right are derived. The yellow circle (middle panel) on brainstem cross-sections from postmortem tissue show where the advanced MRI (right) identified areas for further analysis.
cerebrospinal fluid, they may be used in tests for early detection of Parkinson’s or even for monitoring the effectiveness of future therapies. Currently, no such blood or spinal fluid tests are available. In addition, lowering polyamine levels in
develops in people who have no family history
cells has been suggested by the authors as a
of the disease.
novel approach to alter the course of Parkinson’s.
Presented in the September 2010 issue of the
Further research is needed to determine whether
Proceedings of the National Academy of
reducing polyamines may in fact ease Parkinson’s
Sciences, Dr. Small and his colleagues used a
symptoms or slow disease progression.
PDF Annual Report 2010
Ensuring the Best Nursing Care for People with Parkinson’s Nurses are often a first point of contact for people living with Parkinson’s. Not only do nurses provide medical care; they also play a key role in ensuring that people with Parkinson’s have the best possible quality of life. Unfortunately, there is little information on the disease designed specifically for nurses. To address this need, PDF led a collaborative effort with the National Parkinson Foundation and the American Parkinson Disease Association in 2010 to develop an online educational nursing course, Parkinson’s Disease Across the Lifespan: A Roadmap for Nurses. This free online course ensures that nurses have the opportunity to learn the latest in Parkinson’s comprehensive care. Designed by Parkinson’s nurse specialists, the course was taped in front of a live audience on May 21 and made available via a live and archived webcast to thousands of nurses throughout the US and around the world. The course includes modules discussing the challenges of Parkinson’s throughout the lifespan, and the vital role that nurses can play in managing care. Modules are led by Parkinson’s nurse specialists, physical therapists
“The exceptional collaboration among PDF and other Parkinson’s organizations has made this a milestone for movement disorder nursing. This course addresses a critical gap in improving the quality of life for people living with Parkinson’s. Nurses now have access to information to provide evidence-based practice across a continuum of care.
and people with Parkinson’s, and continuing
Lisette Bunting-Perry, Ph.D., R.N.
education credits are available.
Parkinson’s Nurse Specialist
As of June 2011, over 6,400 nurses from all 50 states and 29 countries have registered for the course and are learning about the latest in Parkinson’s care.
Cultivating Young Scientists to Research Parkinson's In her current role as an advisor to the PDF HelpLine, Christina
the disease. But she was unsure
Vaughan, M.D., M.H.S. — a PDF-
at that time as to what form her
funded post-doctoral fellow in
career would take when it was
movement disorders at Rush Uni-
suggested that she apply for a
versity Medical Center in Chicago,
PDF summer fellowship.
IL — helps to answer unusual and
Christina Vaughan, M.D., M.H.S.
Dr. Vaughan was accepted
difficult questions about Parkin-
and spent the summer of 2002
son’s disease. But when Dr.
at the University of Pennsylvania
Vaughan first came to PDF nine
Parkinson’s Disease and Move-
“PDF’s summer fellowship opened up opportunities to work with some of the best Parkinson’s researchers and to have a very meaningful clinical experience with people living with Parkinson’s.
several of her loved ones live with
years ago, it was as an ap-
ment Disorders Center, in
plicant for one of our Sum-
Philadelphia, PA, examining peo-
mer Student Fellowships.
ple living with Parkinson’s dis-
This program funds stu-
ease who had undergone deep
dents at several levels,
brain stimulation (DBS), and inter-
from advanced undergrad-
viewing them about their post-
uates to graduate and
medical students, to pur-
Following the completion of
her medical degree and a resi-
summer research projects
dency in neurology at the Univer-
under the guidance of
sity of Pittsburgh, she moved to
leaders in the field.
Rush, where she is training to be
Dr. Vaughan already
a Parkinson’s specialist with a
had a personal interest in
special interest in the mental
Parkinson’s, having seen
health of people with Parkinson’s.
By leveraging its research investments into supporting great ideas generated by Parkinson's scientists, PDF aims to facilitate the next big discovery in PD.
PDF Annual Report 2010
Reduction in Parkinson’s Medications Tied to Withdrawal Syndrome Reducing the dosage of dopamine ago-
dosage, five people developed persistent
nists in people with Parkinson’s may
anxiety, panic attacks, depression, orthostatic
produce withdrawal symptoms, such as
hypotension (low blood pressure), fatigue,
dizziness, anxiety and panic attacks, accord-
pain and drug cravings. Dr. Nirenberg has
ing to a report by Melissa J. Nirenberg,
named this phenomenon “dopamine agonist
M.D., Ph.D., and her colleague Christina A.
withdrawal syndrome” or DAWS. The syn-
Rabinak, of New York-Presbyterian Hospi-
drome tended to develop immediately follow-
tal/Weill Cornell Medical Center, in the Jan-
ing drug tapering, which resembles the
uary 2010 issue of Archives of Neurology.
course of withdrawal symptoms in most situ-
With funding from PDF, Dr. Nirenberg
ations of drug dependence or addiction. In
performed a retrospective study examining
addition, the individuals who experienced
the medical records of 93 people living
DAWS had all previously experienced an im-
with PD, 40 of whom had received
pulse control disorder, such as a gambling ad-
dopamine agonists and 53 of whom had
diction, hypersexuality or excessive
been treated with other medications. The
spending. Individuals with DAWS requested
participants were similar with regard to
to resume their prior high dose of dopamine
age, disease duration, gender and age of
agonists, even though their PD motor symp-
toms were well controlled.
She and her colleague found that dur-
The study involved a small number of
ing routine Parkinson’s care, the dopamine
people, and more research is required to
agonist dosages of 26 people within the
learn about incidence, risk factors, time
group had been reduced by their doctors.
course and pharmacological aspects of
This “tapering-off” was often performed
DAWS, as well as strategies to avoid or
because the person was experiencing an
treat the syndrome. For people with PD
impulse control disorder, such as pathologi-
and physicians who plan to reduce
cal gambling, compulsive eating and com-
dopamine agonists, it is important to be
pulsive shopping — all of which can be side
aware that symptoms of withdrawal can
effects of the medications.
occur, especially in individuals with a his-
Following the reduction in medication
tory of anxiety and addictive behaviors.
FINANCIAL REPORTS Statement of Financial Position June 30 2010
Assets Cash and cash equivalents
Contributions and other receivables
Fixed assets, net
Other noncurrent assets
Investments â€” restricted as to use
Accounts payable and accrued expenses
Other current assets Investments, at fair value
Liabilities and net assets
Deferred compensation plan Total liabilities Net assets
Total net assets Total liabilities and net assets
Percentage of dollars spent
on our mission
In 2010, PDF was awarded both a four-star rating from Charity Navigator (the highest) and the Charity Seal of Approval from the Wise Giving Alliance of the Better Business Bureau (BBB).
PDF Annual Report 2010
Statement of Activities Year ended June 30, 2009
Year ended June 30, 2010
Special events revenue, net
Net assets released from restrictions
Total operating support and revenue
Public information/patient information and referral services
Total supporting services
Total operating expenses
Change in net assets
Net assets, beginning of year
Operating support and revenue: Contributions Bequests
Operating expenses: Program services:
Total program services Supporting services: Management and general Fundraising
Net assets, end of year
H OW Our Funds Were Spent | 2010 Advocacy 5% Education
Administration & Fundraising Research
The work of the Parkinson’s Disease Foundation is only possible because of the generous support of numerous individuals, families, foundations and corporations. PDF gratefully acknowledges the following donors who are helping us improve the lives and futures of people touched by Parkinson’s.
Bal du Printemps Pays Tribute to Philanthropists and the Power of Music On May 12, 2010, nearly 300 guests gathered
Mr. Benjamin was diagnosed with Parkinson’s
for PDF’s annual Gala, Bal du Printemps, in New
disease in 1996 at the age of 38, and shortly
York City. The evening honored two long-time
thereafter, founded Light of Day. In the past ten
friends of PDF and was a festive tribute to the
years, Light of Day has held concerts in eleven
special significance of music as a healing and
countries, welcoming special guests such as
creative force for people living with Parkinson’s.
Bruce Springsteen, and raising $1 million for
John and Margo
John Jr., and An-
The Catsimatidis family — John, Andrea, Margo and John, Jr. — is presented with the Page and William Black Family Philanthropy Award.
As PDF Ex-
drea, were pre-
sented with the
Page and William
noted, “Both the
Black Family Phi-
ily and Bob Ben-
in recognition of
jamin have been
PDF Executive Director Robin Elliott presents Bob Benjamin with a personalized award, a painting created for him by Cindy DeLuz, a person living with Parkinson’s who is a participant in PDF's Creativity and Parkinson's Project.
their years of generosity and leadership at PDF.
They were introduced, via video, by their close
in the cause and have provided inspiration to oth-
friend, former President William Jefferson Clin-
ers in the community through their philanthropic
ton, who spoke about the family’s commitment
efforts. We are proud to say that this year we
to bettering their community.
honor not just generous supporters, but also
Later in the evening, Robert “Bob” Benjamin and The Light of Day Foundation were awarded the Page and William Black Humanitarian Award.
true friends.” PDF thanks this year’s Gala leadership for making this event possible.
PDF Annual Report 2010
Celebrate Spring Engages Young New Yorkers in the Cause On April 29, 2010, nearly 300 guests joined PDF and the Young New Yorkers for the Fight Against Parkinson’s committee for Celebrate Spring. For the third year, Co-Chairs G. Pennington Egbert III, Missy Egbert Sheehan and
Greg Romero, Andrew Johnston, Emily Davis, Will Rabbe, Natalie Glaser, and Jon Lawrence (left to right) celebrate spring. Celebrate Spring leaders and sponsors (left to right): Missy Egbert Sheehan, G. Pennington Egbert III, Georgina B. Schaeffer.
Georgina B. Schaeffer, whose fathers both lived with Parkinson’s disease, led the event. They did so with the help of a group of nearly 100 New Yorkers also dedicated to advancing a cure for Parkinson’s. Proceeds from the event support a research program identified by Lucien Côté, M.D., a Parkinson’s specialist at Columbia University. PDF thanks its co-chairs and the Young New Yorkers for the Fight Against Parkinson’s committee for their continued support of this event.
“It is imperative to hold events like Celebrate Spring, to reach out to a younger generation and let them know there are ways that they, too, can help in the fight against Parkinson’s.
G. Pennington Egbert III
Raising the Stakes, Raising Funds On November 10, 2010, more than 200 guests “Raised the Stakes” for joyed games of chance, such as blackjack, and competed to win exciting prizes. PDF thanks event co-chairs Jose Cruz, Amy Sole, Peter Dorn, Jeffrey Zygler and Dan Spanton and the host committee for their hard work in making this event a success.
Parkinson’s in New York City. Guests en-
DONORS PDF Champions are the dedicated individuals — some with Parkinson's themselves, others who have friends, family and colleagues living with the disease — who give their time and energy to raise awareness of Parkinson's and funds for PDF in their local communities. In 2010, these volunteers have helped to move the cause forward by organizing bake sales, running marathons, participating in bike rides and walk-a-thons ... or by creating their own personalized pages on the PDF website in honor of loved ones with Parkinson's.
June 14, 2010 Dear Parkinson’s Disease Foundation, I just wanted to let you all know about something special my kids did. One Saturday in May, my children, Matthew, age 10 and Juliana, age eight and their friend, Canyon, decided to operate a lemonade stand in front of our house. They had been outside for a while and had already needed a refill on the lemonade when I went out to check on them. I was wearing my Parkinson’s Awareness Month T-shirt and they asked me about it. So I explained what PDF was and a little about Parkinson’s disease. My son said, “Hey! That gives me an idea. Let’s donate the money we make to PDF to help Honey!” (Honey is their Grandmother who has Parkinson’s). They all agreed to donate it. I was very proud of them and think it is a great thing to do with their money! Please accept the donation of $20.40 from my children’s lemonade stand. Thank you, Rhonda Cabello
PDF Annual Report 2010
Music for Parkinson’s Research Nearly 200 music lovers and others dedicated to the fight against Parkinson's disease gathered for the Eighth Annual Music for Parkinson's concert on December 5, 2010, at Rye Country Day School in Rye, NY. The event, organized by Music for Parkinson's Research, raised $37,000 in net proceeds for PDF’s
MPR Founder and PPAC Co-Chair David Eger, Ph.D., (left), PDF Executive Director Robin Elliott and PPAC member Rhona Johnson at the Eighth Annual MPR concert.
research programs. The afternoon featured performances by several leading chamber music artists including John Stine, Gena Raps and the Attacca Quartet. After the concert, guests enjoyed a wine and cheese reception and chatted with the musicians. Music for Parkinson's was founded by three individuals, led by David Eger, Ph.D., who has worked with PDF for many years — especially as a founding member and Co-Chair of PDF's People with Parkinson's Advisory Council, a group that advises the foundation on its
“We were thrilled by the support from friends, family, community members and PDF staff and board members who came together to help raise funds to find the cure for this disease.
David Eger, Ph.D.
Golfing for a Cure On August 11, 2010, 100 golfers gathered at the Farms Country Club in Wallingford, CT, for the Fourth Annual Zwick Pro-Am. Named for long-time club member Lenny Zwick, who lived with Parkinson’s for 25 years, the tournament featured 18 holes, a luncheon, a silent auction and an awards dinner. Among the friends and family of Mr. Zwick who participated were his wife Susan,
Mother and daughter, Susan (left) and Stacey Zwick with Dave Melillo at the Fourth Annual Zwick Pro-Am.
daughter Stacey and event organizer Dave Melillo. The Pro-Am raised over $50,000 to benefit the research programs of PDF.
research, education and advocacy programs.
DONORS In Action
The following list highlights our PDF Champions whose efforts from July 1, 2009 to December 31, 2010 not only helped PDF to fund promising research, but also served to raise awareness in communities around the US of the impact of this disease. Matthew Arendt Angela Berktold Jon Bracamonte Orange County Marathon Laurel Burrill Big Mountain Run for Dad Christopher Castaldo Castaldo Walk John Consolazio Conzo's Run for Dara Chicago Marathon Matthew Coz Burning River 100-Mile Run Alexandra Cudby 2009 Pottery for Parkinson's Karen DeGraaf David Eger, Ph.D. Music for Parkinsonâ€™s Research EVB Parkinson's Disease Fundraiser Jill Faenza Jocelyn Flores Linda A. Gagner Kathryn Garvey Doug's Wild Ride
Jennifer Iaccarino New York City Marathon Randi S. Jacobs Jerry Jensen Lindsay Kaldor Miami Marathon David Kates Elizabeth Keshish Tennis Wrist Band Sale Katie Linehan
Pie in the Face Fundraiser Molly Riddick Pancakes for Parkinson's Jennifer Roach Disney Princess HalfMarathon Thomas C. Silver Berlin Marathon Lani Skelley New Day, New Hope Dance Show Lauren Smith Smith Family Tri-Mitzvah
Spirit Week Collection
Cynthia T. Loynd
Phil Sweet An Evening of Comedy featuring The Late Shift
Rev. Bernard Marton Cowtown Ultra Marathon
Tour for a Cure 2010
David P. Melillo Zwick Pro-Am
Wacounda Fest 5K/10K Run for a Cure
Ed Mobley Sunday School Event
Debbie Weber Big "M" Run
Greg Mocarski Philadelphia Marathon
Lauren Williams 3 4 Fighting Parkinson's Bike Ride
Quinn Morlock The Run for Parkinson's
Lori Morrow Chicago Marathon
Brian Gilbart Chicago Marathon
Jacqueline M. Paul New York City Marathon
Linda Giorgilli Rice
Parameswaran Hariharan Flying Pig Marathon
Audrey Winthrop Parkinson Open Road Race Gillian Woods Keeping the Pace
PDF Annual Report 2010
The following are the names of individuals, families, foundations and corporations who have made cumulative gifts of $500 or more between July 1, 2009 and December 31, 2010.
Individuals Irving and Lorraine Aaron
Dr. Shahid Atcha
Colman and Nancy Abbe
John and Anne Atherton
Richard A. Bernstein
Kyle W. Abel
Bill and Terri Breach
Robert and Georgean Abels
Mr. and Mrs. David M. Berwind, Sr.
Norman S. Abrams
Buck and Leslie Balkind
Dr. and Mrs. Walter Ballinger
Stephen and Marsha Ackerman
George and Janet Barnard
Carol H. Adragna
Dr. Avadesh and Uma Agarwal
Heather Barry and Robert Snyder
David and Jo Anne Bescherer
Michael and Tracess Brenner
Ruth Pollack and Martin Bressler
Mr. and Mrs. Alan L. Bibby
Carol S. Brewer
Kevin and Debbie Biddle
Irving G. Brilliant
Dr. Maurice and Sarah Birdwell
Bill Brink, Ronald Paulis, and Richard Sherratts
John and Patty Brissenden
Page Morton Black
Peter M. Bauer
Michael and Marcia Beck
David H. and Mary B. Blair
Cliff and Arlene Blaker
Mr. and Mrs. Frank M. Bell, Jr.
James T. and Carol Blann
Janet and Lawrence Bell
Steven R. Block
Alfonso C. Bellanca
Theodore and Flora Blumenthal
James and Suzy Bobo
Dr. Russell Brown and Dr. Susanna Brown
George and Jodie Allen
Dr. Gardner and Patricia Bemis
William and Sally Brown
Dr. Ron Alterman
Don and Carol Bender
Benjamin C. Bohr
Phyllis J. Bond
David and Susan Brunell
Mr. and Mrs. Richard Anastasi
Elizabeth S. Bennett
D. R. Booker
Paul L. Berger and Michelle Berger
Mr. and Mrs. Mark Budd
Edward C. Booth
Daryn Bourbin Diana Bouton
Dr. Robert Burke and Dr. Sharon Wardlaw
Richard Ahlvin Kenneth and Ellen Aidekman Robert M. Aiken Mr. and Mrs. Roger E. Ailes Barbara Albert Richard S. Aldrich, Jr. Mr. and Mrs. Thomas S. Alexander
Mr. and Mrs. Nigel Andrews Katrin Hillner Antram
James and Suzanne Bergoffen Mr. and Mrs. Melvin Berlin
Robert and Diane Brogan Mr. and Mrs. Arthur G. Broll, Jr. Michael Bronder James Brossett James S. Brown Michael Brown Peter Brown
Deborah Berman and Bruce Greenberg
Kimberly L. Fehrle Burns
Robert and Patricia Caldwell
Daniel and Shelolia Bernstein
Roger M. Bowman
William C. Cameon
Joaquin and Angela Campo
Jeffrey and Shari Aronson
Janet S. Andersen
Jill and Ken Brodkowitz
DONORS Individuals Lourdes E. Campon
Arlene and Walter Cooper
Mr. and Mrs. Chris J. Dicharry
Robert and Mary Capaldi
Mr. and Mrs. Thomas A. Cooper
Katharine T. Cornelius
E. Scott Dillon
Arnold S. Corrigan
Robin A. Elliott and Dr. Sheila Gordon
Norma M. Cardinal
Norman and Helen Coulson
Mr. and Mrs. Raymond W. Carlin
James G. Dinan and Elizabeth Miller
The Caruso Family
James and Nancy Casty
Lee S. Casty
Ronald G. Casty
Dave and Andy Cross
John and Margo Catsimatidis
Gregory and Amy Cecchi
Jose R. Cruz
Selina and Johnson Cha
Mr. and Mrs. Bernard D. Chalfin
Gene and Judi Curry
Carol and Stephen Chase
Mr. and Mrs. Adam Chasnow
Mr. and Mrs. Phillip A. Daniel
Albert and Vera Chrone
Philip and Mary Danley, Jr.
Anthony and Patricia Cilluffo
Wayne Citrin and Deborah Arhelger
Carol C. Clark, Ph.D.
Jeffrey and Louise Davis
Aaron and Wendy Clayton
Mary Jane and Carleton Cleveland
Mr. and Mrs. Monty Davis
Ellen R. De Carr
Elizabeth K. Cochran
Dr. Conrad De Fiebre
Dr. William Coggshall
Phyllis V. DeCinces
Willard and Gail DeFilipps
Mr. and Mrs. Anthony Del Gatto
Michael and Eileen Cohen
Roberta B. Denning
Gerard Cole, Jr.
Debra M. Collins
Dolores A. Devine
Patricia and Daniel Ellis Paul Ellis
David M. Dines M.D., P.C.
Samuel and Maryann Ellsworth
Vincent T. Dipatre, Jr.
James A. Emanuele
Aida S. Dishman
Michael and Barbara Ditzian
Mr. and Mrs. Steven Errera
Mr. and Mrs. Jeffrey M. Ettinger
Kathleen and Eamonn Dolan
Neil Doppelt and Audrey Adams
Uzi and Anat Evron
Mr. and Mrs. Terry Eward
Peter J. Dorn
Dr. Stanley and Charlotte Fahn
Fernando U. Fajardo
Sal and Dolores Falciglia
Christine A. Doyle
Joan E. Faro
Irene Dranow Blaymore
Norma M. Faul and Family
Mr. and Mrs. David A. Dray
Burt and Noelle Faure
Chris and Jill Drury
Leonard and Gloria Fazio
Luke and Ulana Dubas
Dr. Daniel Feinberg
Roger C. Dunn
David and Linda Fink
Mr. and Mrs. John J. Fleps
Joseph H. Flom
Melissa Egbert Sheehan
Dr. Ann E. Fordham
G. Pennington Egbert III
Mrs. George P. Egbert, Jr.
Mr. and Mrs. Alan J. Forman
David and Jane Eger
Dr. and Mrs. Brian Forst
Ronald A. Eger
Dr. Craig and Blake Foster
Mr. and Mrs. Thomas D. Fowler
Dr. Robert and Carla Fox
PDF Annual Report 2010
Mr. and Mrs. Stuart Fraser
Dr. Thomas R. Goldsmith
Dr. Anne Fribourg
Mr. and Mrs. Benjamin Gomez
Donald and Marilyn Hail, Lynn and Anne Baker, and Hughes Machinery Co.
Lois Fried, David and Ethyl Fried, Michael Fried, Ken Fried, and Barbara and Jim Weese
Dr. Robert R. Goodman
Alyce C. Halchak
Hon. Roy Goodman
John and Athena Halkias
Alan L. Gordon
Elizabeth and Marvin Hoekstra
William C. Friend
Philip and Mary Hogan
Elizabeth B. Friou
Peter John Goulandris and Dr. Karen E. Burke
Stephen and Margot Holland
Mr. and Mrs. Thomas G. Grace, Jr.
Beverly H. Hardegree
Dr. Joseph G. Gackenbach and Family
J. Alan and Karen Harding
Sarah Belk Gambrell
Stephen L. Graessle
Dr. Parameswaran Hariharan
Sandy and Bruce Horn
Alan and Marion Garfield
Mr. and Mrs. Richard Hornstein
Dr. Michael and Dena Granof
Steven G. Harper, M.D.
Mr. and Mrs. Daniel Gersen
Mr. and Mrs. Eugene Grant
William H. Harrison
Margaret C. Houlding
Mr. and Mrs. James R. Gray
Benjamin and Doris Harwell
Timothy P. Hubartt
Mr. and Mrs. Alan C. Greenberg
Deborah and Alan Huber
B. J. and Howard Greenberger
Glenn and Sharon Hawkins
G.S. Beckwith Gilbert
Jimmie and Kurt Hayek
Robert M. Gilhooley
Mr. and Ms. Nicholas P. Greville
Dr. John and Peggy Heilman
Anthony and Susan Gilroy
Mr. and Mrs. John Scott Griffin
Jean Kenna Heins
Dr. Nancy J. Huntsman
Robert and Gail Ginsberg
Mr. and Mrs. Lewis Helfstein
Amanda Hirsh and Bret Hirsh
Mark and Beth Ginzinger
Pete and Emily Gross
Troy D. Henry
Dr. Sonia W. Hyman
Michael W. Herlihy
Dr. and Mrs. Chakri Inampudi
Richard W. Giuliani
Lori E. Groves
Margaret S. Herold
Ralph and Barbara Italie
Betty and Max Glass
Leonard and Jennifer Gruenberg
B. Lynn Herrington
Mr. and Mrs. Stuart Hersch
William and Judith Jackson
Marvin and Renee Herskowitz
Randi S. Jacobs
Henry G. Herzing
Steven and Sherry C. Hibshman
Selwyn and Marjorie Jacobs
William and Mary Hicks
A. Donald Janezic, Jr.
Richard L. Hildbold
Mr. and Mrs. Arthur P. Jentoft
Mr. and Mrs. Lane M. Hill
Donald and Marian Johnson
Marjorie and William Hill
David and Carolyn Jones
Isabel Glass Carol Glickenhaus Morton and Claire Goetz Nancy Gold Michael and Anne Golden Alvin Goldman Amy Goldman David Goldman James and Sarah Goldman Steven Goldman Stephanie Goldman-Pittel and Andrew Pittel
Nicole D. Guidara William and Ruth Gulick Geoffrey and Sarah Gund Sharyn L. Gunderson Arlen R. Gunner Shelly Guo Gene Gurkoff Jon and Stevi Gurkoff Andrew Gustin Lydia Gustin Mark Guzzi
Nathaniel and Judith Jones
Eleanor N. Jordan
Nancy E. Hinckley
James E. Jordon Robert and Sheryl Josephson
Gerald Z. Gibian
Harold and Pamela Huberfeld
DONORS Individuals Timothy Kacmar
So Young Lee
Larry and Janis J. Malone
Isobel R. Konecky
Suzanne M. Leggett
Ellen H. Manian
Mr. and Mrs. William Konecky
Mark and Gaby R. Lehrer
Leo S. Maniatty
Mr. and Mrs. Lew Kornberg
Mr. and Mrs. Patrick Maraghy
Daniel and Susan Kane
William F. Korth
Benjamin and Kristina Marchant
Marcia and Walter Kortschak
Laurie Leiner and Morton Katz
Dr. Karen Marder
Mr. and Mrs. Robert Kantor
Janet P. Kramer
Walter F. Leinhardt
Renee Lerner and Family
Mr. and Mrs. Jeffrey Kransdorf
Sally W. Leung
Sidney and Phyllis Margolis
Gary M. Karlitz
David and Susan Kraus
Dr. Ilan and Dr. Barbara Levi
Dina L. Levin
Richard and Jane Karp
Francine and Irwin Levine
Dr. Philip A. Marraccini
Judie Stern Kreston
Jerome and Arlene Levine
Theresa L. Marran
John and Catherine Liguori
Mark B. Kristof and Beth V. Ward
Ruth V. Lilley
Sheryl R. Martin and Anton Schermer
Mr. and Mrs. David C. Kell
Mr. and Mrs. Rhett Krulla
Mr. and Mrs. William M. Linden
Dr. David L. Keller
Howard and Gail Kunreuther
Mr. and Mrs. William A. Lindstaedt
Elaine P. Kend
Diane L. Kurtz
Edward and Sylvia Linhares
Arthur and Nancy Kesselhaut
Mary and Franklin Kilgore
Leonard La Manna
Mr. and Mrs. Scott Kilrea
Rutherford C. Lake,III
Mr. Daniel and Mrs. Mary Littley
Dr. and Mrs. Francis I. Kittredge
Alan and Linda Landis
Robert M. Lofberg
Robert F. Landy
Mr. and Mrs. Robert Long
Michael and Cynthia McConnell
A. Bliss McCrum, Jr.
Stephen E. Klein
Don and April Lange
W. Wilson Lowery, Jr.
Suzanne and Robert Klein
Mr. and Mrs. Manuel Larramendi
Gary M. Kleingartner
George and Priscilla Matouk Mr. and Mrs. William Mattson Diane Matusiak J. Robb and Susan Mayo Alexander and Marianna McAfee Randall T. McCallum Charles and Anita McCarthy Mary B. McCaskey
John and Helen McGrath Austin J. McGreal
Joanne C. MacCallum
Gene G. Leary
George R. Mahoney, Jr. and Linda L. Mahoney
John and Molly McMahon
Pauline M. Lecomte
Mr. and Mrs. Burton C. Mallory
George and Evie Evers Kling
Sarah Le Sueur
Dr. David L. Klionsky and Eva Youshock
Jeffery R. Leake
Yvonne L. Mason
Dr. and Mrs. Timothy Larson Robet O. Laven
Edgar and Eileen Koerner
Mary Ann and Dale Masher
Chris P. Lucas
Mr. and Mrs. Edward Kleinschmidt
David J. Marx
John P. McMichael W. McMillin
PDF Annual Report 2010
Dana C. Puddy
Dr. Charles Morris
Mrs. Peter M. McVey
Mila A. Ostin
Jeffrey W. Moses, M.D.
Thomas P. Racobaldo
Dana R. Meeks
Paul V. Mrugacz
W. Matt and Amelia Ralls
Diane M. Mueller
Mr. and Mrs. Robert Paglia and Family
Mr. and Mrs. Matthew Mueller
Merle D. Melvin
Mr. and Mrs. Michael Murphy
Dr. Robert Mencher
Mark and Karen Mihalik
Jeanette Y. Mihaly
Michael and Kristin Reed
Lucy J. Reinheimer
Virginia W. Peters
Ralph and Barbara Reis Sondra Reisinger
James and Alison Neisloss
E. Margie Peterson, Lucile Smith, and Mr. and Mrs. J. D. Houghton
Dr. and Mrs. Dennis P. Nelson
Mr. and Mrs. Frank A. Petitti
James Philbin, III
Agnes E. Nixon
The Revoir Family
Marla E. Nock
Colin G. Pitt
Anthony and M. Allison Richards
Edward J. Noha
Robert S. Northington
Mr. and Mrs. Michael A. Riddick
Mr. and Mrs. Robert Riefstahl
Eugene A. Poel
Sandra L. Rigopoulos
Mr. and Mrs. Eugene A. Nowell
Drs. John and Susan Pollack
Mr. and Mrs. Lawrence C. Nussdorf
William and Carol Pollak
Martin and Valerie Pollner
William F. Ringier
Mr. and Mrs. Henry A. Pope, Jr.
Louisa and Henry Porter
Ralph N. Robbins, D.D.S.
Brenda G. Roberts
Mr. and Mrs. Jeffrey D. Roberts
Daisy Prince and Hugh Chisholm
John and Marnie Olson
Mr. and Mrs. Timothy Onders
Gail and Ephraim Propp
Lawrence and Sandra Puckett
Gary M. Nath
Mr. and Mrs. Doug Millar
Paul and Marcy Nathan
Dr. David Miller
Deborah Miller and G. Timothy Black
George P. Mitchell Thomas Mollison John P. Molloy, Sr. Donna Mondani Mr. and Mrs. Joseph Monteleone Christopher Montgomery
William J. Montgoris Don and Linda Moore Mr. and Mrs. George E. Moore Nancy A. Moore Mr. and Mrs. Robert E. Moore Dr. and Mrs. Donald E. Morel Howard and Ginger Morgan
Thomas and Brenda Roberts Mr. and Mrs. Eric S. Robinson Andrew and Harriet Rockefeller Raymond Rodgers
Jan M. Montgomery
Milton and Cheryl Mill
Deanna L. Mitchell
Jacqueline M. Paul
Terrie L. Ray
Richard and Lois Miller
William S. Penick
Carl and Wanda Nafzger
Phyllis W. Miller
Debra Raskin and Michael Young
Robert and Gail Milhous
Gerald and Barbara Ranzal Cathy Raphael
Melba Pearlstein, Esq.
James R. Milford
Joseph H. Miller
DONORS Individuals Robert J. Rokose
Burke L. Schloss
Robert and Heddie Romanoff
Gregory and Barbara Romero
Jay and Suzette Schochet
Mr. and Mrs. Mark K. Silverstein
The Romero Family
Ms. Christianna L. Strohbeck and Dr. Ramaswamy Murari
Joseph M. Simonet
Dr. Thomas J. and Jean Schreiber
J. Robert and Linda Sims
Mr. and Mrs. Edward Rosenblum Carol Rosensweig and Charlene D. Grant Lyn Rosensweig Melvin S. Rosenthal Mr. and Mrs. David Rosinus Dr. Harley A. Rotbart Stanley Roth, Jr. Mr. and Mrs. Steven Rourke Dr. and Mrs. Lewis P. Rowland Drs. Stephen and Marie Rozan Antonio Ruiz Paul Ruiz Natalie Rule Ken W. Ryder Alice M. Saari Steven B. Sadler Mr. and Mrs. Albert Safer Betsy B. Salinger Saul M. Salka Harold Salmanowitz Dr. and Mrs. Henry D. Salter, III Pat Santoro Hellyn L. Sarek Mr. and Mrs. Ron Sargent John and Deborah Scanlon
Shelley and Blair Schrum David M. Schuld Edward F. Schuler Brian and Kathy Schultz Sue Schultz Howard and Phyllis Schwartz Jeff and Iris Schwartz Marie D. Schwartz Martin Schwartz Nancy S. Schwartz Stephanie R. Schwartz Mrs. Frederick E. Schwarzmann Thelma J. Scott Ethel Seife Mark and Laurie Seruya Vincent D. Sexton, Jr. Emily Eileen Shanks Leslie Shapiro Ronald and Evelyn Shapiro Theodore and Joanna Shapiro Felice K. Shea Mr. and Mrs. Sidney J. Sheinberg Dr. Sam Shelanski David H. Shelton Debbie J. Shepherd Cindy Sherman
Mr. and Mrs. Robert A. Schaefer, Jr.
Jack and Paula Sherman
William S. Scherman
Dr. and Mrs. Thomas Shiftan
Dr. and Mrs. Neil Schiff
Beverly K. Shulman
Dr. Gregory and Patricia Schlegel
Rose L. Shure
Arthur and Dr. Sandra Siler
Philip S. Sirianni, Jr. Samuel J. Sirota Arline B. Slepoy Catherine Slivinske Dr. and Mrs. Bernard E. Small Shirley Small James Smith Kathryn Smith Laurel E. Johnson-Smith Susan S. Smith Wallace and Bobbie Snipes Mr. and Mrs. Marcellus Snow B. Robert and Mary A. Snyder Hon. Jay T. Snyder Mr. and Mrs. Paul W. Snyder, Jr. Phyllis Sonnega Douglas Spaniol Ruth R. Spoerri Matt and Barbara Stanek Mr. and Mrs. Steven Starker Alice M. Starr
Lindsey Strubhar Laura Sudar Arthur Suekoff Charles and Vivian Sukenik Dr. Judith Sulzberger Ram K. Sundaram Rebecca C. Swan James and June Swartz Phil Sweet Edward Swenson Kevin V. Symmons Laura J. Taff Jonathan Tait Mr. and Mrs. Jim Talmage Terri Tarin Carol and Melvin Taub George Tavlarios Mary Elizabeth Taylor Louis Teitelman and Family David Tepper Anne Ternes Matthew Terry The Liro-Hill Family
Roger and Marianne Staubach
Mr. and Mrs. William S. Thompson
Mr. and Mrs. David Timony
Joanna T. Steichen
Zane G. Todd
Mr. and Mrs. Douglas Stern
Jonathan and Sydney Stern
Jodie and Brian Tunis
Mark and Elle Stern
Dr. Richard and Gail Ullman
Sandra and Evan Stern
Johanna M. Utrecht
Sy and Laurie Sternberg
Russell and Whitney Van Nuis
Mary Steyer and David Conway
Jennifer and David Stockman
Paul and Gayle Stoffel
Benjamin and Deborah Varat
PDF Annual Report 2010
Mr. and Mrs. Jeffrey Varsa
Jeffrey and Lise Wilks
Kenneth and Kimberly Williams
Richard N. Vaughan
James W. Williamson
Mr. and Mrs. George E. Willis
Edward M. Vietor
Joseph M. Volk
Jules and Florine Wachter
Fred and Mary Woodlief
Doris C. Wages
James C. Woods
Joe and Virginia Woods
Mr. and Mrs. Alan S. Waldenberg
Terry and Karen Wright
Dan Walsh Audrey Warfield Bridget Weaver Elizabeth Weber Evelene Wechsler Audrey and John Wee James M. Weichert Kenneth and Susan Weil Jeffery L. Weiner Jon and Jill Weiner Elizabeth Weinraub Dr. Arthur and Natalia Weinreb Andrew Weinrich Herbert and Judith Weintraub Mr. and Ms. Bernard W. Weiser Dr. James Weiss Marvin Weitz
H. Frederick Wessler Richard Westbrook Delores E. Westphal Lawrence E. White Mary Wiebke M. R. Wiegandt Mr. and Mrs. Craig Wierda
William Wynd Jerome and Selma Yaguda Jeffrey Yost Susan and Nathan Yost Barbara Youderian Jeanne Young Peter M. Young Gordon M. Younger Pat Younts Jed and Brenda Zachs James D. Zankel Sam Zaro Judy Zendell Louis Zimmerman Cynthia Zirinsky Donald and Lynn Zucker Susan Zwick
DONORS Foundations/Corporations/Organizations 3 4 Fighting Parkinson's
A. G. Foundation
Brookhill Planning, LLC
Brown Charitable Foundation
Advantage Testing, Inc.
Budwitz and Meyerjack, P.C.
Kenneth Aidekman Family Foundation
Mabel Burchard Fischer Grant Foundation
Airtex Design Group, Inc.
Burgundy Foundation, Inc.
The Shana Alexander Charitable Foundation
Cagney Insurance Network, Inc.
Allstate Giving Campaign The Allyn Foundation, Inc. America's Charities Amicus Therapeutics Gigi Arledge Foundation ASR Electric Contractors
Campbell, Inc Canata Family Foundation The Carefree Foundation Cars Helping America, LLC Cassady, Schiller and Associates, Inc. Castle Harlan, Inc.
AT+T United Way
James and Nancy Casty Charitable Foundation
The Atmos Foundation
Lee S. Casty Philanthropic Fund
Automatic Data Processing, Inc.
Ronald G. Casty Family Foundation
Don Ayres Pontiac Bana Electric Corp The Bane Foundation Bank of America Barclays Capital Charitable Giving Barish Family Foundation Alvin H. Baum Family Fund Berner Charitable and Scholarship Foundation Bernstein Foundation, Inc. The Mary Duke Biddle Foundation Biotechnology Industry Organization Bisgeier Family Foundation Page and William Black Foundation
Edna Williams Curl and Myron R. Curl Fisher Landau Center for Art Endowment for Parkinson's Focus On A Cure Customized Energy Solutions Forest Family Foundation Daffy's The Fremont Foundation Dana and Jesse Lehman Foundation GE Foundation Davis Phinney Foundation General Electric Co. DCH Montclair LLC D/B/A Montclair Gerson and Gerson, Inc. Acura Gilmon Holdings, Inc. Defense Web Technologies, Inc. Deloitte and Touche
Give With Liberty
GivingExpress Program From American Express
Deutsche Bank Americas Foundation Diamantine Family Foundation, Inc.
Ruth and Jack Glantz Family Foundation Inc.
Harriet Ford Dickenson Foundation
Discover Financial Services
Edward and Marjorie Goldberger Foundation
The Dopkin-Singer-Dannenberg Foundation, Inc. Dorf Associates Dreiseszun Family Foundation
Goldman Sachs Gives Jerome and Molly Goldstein Philanthropic Fund
Cedar Grove Lutheran Church
The DuBose Family Foundation
The Samuel and Grace Gorlitz Foundation
Ralph J. Duffie, Inc.
Lee Gottlieb Fund, Inc.
Charlotte Pipe and Foundry Company
Echlin Foundation El Paso Corporation
The Tom and Bonnie Grace Family Foundation
Elias Charitable Foundation
Grand Council Cryptic Masons
Elija Holdings, Inc.
Eugene and Emily Grant Foundation
The Chase Fund, Inc. Citigroup Louis and Virginia Clemente Foundation, Inc.
Elmwood Charity Fund, Inc.
Coca-Cola Enterprises, Inc.
Empire State CDC: The 504 Company
The Betsy and Alan Cohn Foundation, Inc.
Encana Oil and Gas (USA), Inc.
The George E. Coleman Jr. Foundation Epic Systems Corporation Simon and Eve Colin Foundation, Inc. Ernst Foundation, Inc.
Greenberger Family Fund of the Jewish Communal Fund The Gwendolyn Halsey-Albertson Foundation George W. Harris Foundation The Harte Auto Group
Hauser Family Foundation, Inc.
The David H. and Mary B. Blair Charitable Fund
Columbia University Neurological Institute
Fairchild Martindale Foundation
Barbara Fatt Costikyan Fund
Leona M. and Harry B. Helmsley Foundation, Inc.
Karn Couzens and Associates, Inc.
Arthur and Eve Fastenberg Philanthropic Fund
Jonathan C.S. Cox Family Foundation
FBC Holdings, Inc.
Homestead Foundation, Inc.
The Cox Family Foundation
Fercat Holdings, Inc.
Hon Family Fund
Hope for a Cure Foundation
Boehringer Ingelheim Pharmaceuticals, Inc. Bonner Family Private Foundation, Inc. Boucher Charitable Foundation
Philip M. Hogan Family Fund
PDF Annual Report 2010
Syde Hurdus Foundation, Inc.
Kajima Building and Design
Sheila And Milton Hyman Foundation
The Kandell Fund
Elizabeth Knight Cochran Fund of The Greater Cincinnati Foundation
Jerome A. Kaplan and Deena L. Kaplan Family Foundation, Inc.
The Knippenberg Foundation
Fred Kassner Family Foundation
The Kohn-Claar Family Foundation
Isermann Family Foundation
Kastle Greens Corp.
J. B. J. Construction Corp
The Max and Rose Katz Foundation, Inc.
I Do Foundation
Eli Lilly and Company Foundation, Inc. Litterman Family Foundation Litwin Foundation, Inc. Lawrence Livermore National Laboratory
The Kortschak Family Foundation
Loeb and Loeb LLP
The Kosher Nosh
Lovinger Family Foundation
Harry L. Kavetas Family Fund
Lady's Secret Foundation
Lowenstein Sandler PC
The Kellogg Collection, Inc.
The Janus Foundation
Kelly Family Foundation
Mace / Mechanical Contractors, Inc.
William Lehrer Charitable Fund
Johnson and Johnson Family of Companies
The Leonida Family Foundation
Kings Point Drama Club
A. L. Levine Family Foundation, Inc.
Jaffee Foundation Joel and Carol Jankowsky Foundation
Jordan Family Foundation Dr. Rudolph and Mildred Joseph Foundation
Sam W. Klein Charitable Foundation
JP Morgan and Co.
The Max D. and Cecelia Knell Family Foundation
Kniffin Family Foundation
The Leon Levine Foundation
MAERSK, Inc. Ann S. and Albert L. Maltz Foundation Matich Corporation
William and Nancy Lifland Fund
Mazur, Carp, Rubin and Schulman, P.C.
Light of Day Foundation, Inc.
The McGraw-Hill Companies
THE JAMES PARKINSON LEGACY SOCIETY We thank the following members of the James Parkinson Legacy Society who have included PDF in their estate plans or have established a charitable gift annuity with us. Harold F. Jaeger Annette Korn Viola B. Marshall Edith Perman-Allen Marie D. Schwartz Stephanie and Bernard Schwartz
Mr. and Mrs. Robert W. Smith Charles L. Thomas Lucy Veneble M. R. Weigardt James B. Wittrock
If you have made estate plans which include PDF or wish to establish a charitable gift annuity which provides you with income for life, please contact Eddie Pelto, Director of Development at (800) 457-6676.
Gertrude S. Bell Roger M. Bowman Aila G. Dawe Jean Dewdney Guy Estes Elizabeth A. Geiser Matilda Goodman
DONORS Foundations/Corporations/Organizations McKinstry Charitable Foundation Meadors Charitable Fund Medtronic, Inc.
The Parkinson Alliance, Inc. Parkinson's Unity Walk, Inc. Hyman and Bessie Passman Family Charitable Foundation, Inc.
MGM Plans, Inc.
Microsoft Giving Campaign
Midwest Electric Horology Chapter 125 of the NAWCC
Play For Your Cause
Irma and Arthur Miller Foundation
The Shubert Organization, Inc.
The David C. And Jeannie Price Fund
Mount Sinai Hospital
The Ron Shapiro Charitable Foundation
The Portmann Family Charitable Fund
Walter J. Minton Foundation
Leslie C. and Leonard A. Shapiro Family Foundation, Inc.
Alexander Shashaty Family Foundation
Arnold and Marie Schwartz Fund
The Bernard Plotkin Fund
The Harvey L. Miller Family Foundation
The Mirapaul Foundation
The Jean and Thomas Schreiber Philanthropic Fund
R. A. Novia and Associates, LLC R. C. Bigelow, Inc. The Donald Reich Family Charitable Fund
Frank and Domna Stanton Foundation, Inc.
The Robbins Family Foundation
STAR Sharing Time and Resources
The Andrew and Lisa Rodman Foundation
Jerome Stevens Pharmaceuticals, Inc.
New York Times, Inc. North Bergen Federation of Teachers Novartis Federal Credit Union Novartis Pharmaceuticals Corp O.H. Local The Calvin Flavia Oak Foundation, Inc. Thomas P. and Patricia A. O'Donnell Foundation Orange County Community Foundation
Wasily Family Foundation Wechsler Foundation Weeds, Inc.
Roll Giving Eli and Mae Rosen Foundation
The Dorothy Strelsin Foundation
Joseph Rosen Foundation
The Sulzberger Foundation, Inc.
The Benjamin M. Rosen Family Foundation
Summit Construction Co., Inc.
Wellpoint Associate Giving Campaign
Support Claim Services, Inc.
Westchester Hills Golf Club
The Irene Herbert Ross and Harper Grant Ross Foundation
WithumSmith + Brown
Sy Syms Foundation
John Wojtowicz, Inc.
Mary and George H. Zimmerman Foundation
Royal Neighbors of America Leon Rubach Family Foundation Dianne H. Ruthman Family Foundation S and S Realty SAD Foundation Safter Properties Edmond J. Safra Foundation Sanky Communications, Inc.
United Refining Company
John W. and Laura S. Stewart Foundation
Richard and Harriet Orkand Charitable Fund
P. E. C. United Charities, Inc.
The Ullmann Family Foundation
Retired Public Employees Association of California
New England Brokerage Company
Vorst Family Foundation
Re-Steel Supply Co., Inc.
The Netter Foundation, Inc.
Vision Equities, LLC
Thomas Neal Foundation, Inc.
The Trukenbrod Family Foundation
Mutual Of America
National Sound Industries, Inc.
Toshiba America Information Systems, Inc.
United Steelworkers Siegel, O'Connor, O'Donnell and Beck, United Technologies P. C. The Yaspan Unterberg Skadden, Arps, Slate, Meagher and Foundation, Inc. Flom LLP The Ellen M. Violett and Mary Benjamin Solomon P.R. Thomas Foundation Solvay Information Technologies, Inc. Visa Givingstation The Spurlino Foundation
Isidore C. Myers-Joseph A. Erickson Properties, Inc.
The Foundation - To Life, Inc.
Alexandra and Martin Symonds Foundation., Inc. Henry and Marilyn Taub Foundation Joseph and Arlene Taub Foundation Judy and Warren Tenney Foundation Teva Neuroscience, Inc. Three Swallows Foundation Tides Foundation TJM Investments
Weiden Schwartz Fischler Family Foundation J. Weinstein Foundation Inc.
Zoe's Best Friend, Inc.
PDF Annual Report 2010
L. Millard Richmon
Anne J. Schaff
Adele S. Blank
Harry H. Spiegel
Elizabeth Kellogg Crouch
Emerson M. Wallace
Vera Gauthier Didier
Dorothy M. Booth Charitable Trust
Nelson C. Doland, Jr.
Carla U. Wilkinson
Edith Reichman Trust
Mary M. Dubois
Alfreda Lorraine Young
Elizabeth "Betty" J. Rasmussen Revocable Trust
Adele Blank Charitable Lead Trust
Reva H. Newman Irrevocable Trust
Adolph Kutner Inter Vivos Trust
Ruth M. Kroon Trust
Blanche Sussman Trust
Sophia Tomich Living Trust
Dorcile R. Fowler Trust
The Henry W. Chambers Jr. Charitable Lead Unitrust
Dorothy E. Bradford Trust
George S. Flemister
Elizabeth Butterworth Trust
Louise C. Fruehling
Esther Ruddick Trust
Esther Wright Trust
Henrietta H. Hart
Frances Marie Smith Revocable Living Trust
Marie D. Hayes Frances Hirsch
Gladys Field Charitable Lead Annuity Trust
Dorothy Bauer Jochem
Gladys Hyman Trust
Jane and Leslie Katz
George J. Chute Living Trust
Hal Headley Trust
Henry A. Morris and Marian C. Morris Revocable Living Trust
Frank D. Lenig Edward Leshowitz Jean Lewis Florence N. Lifland Mary Helen Linder Barbara L. Louis
J. Bert Jones Trust Jane E. Kerbey Trust Joseph M. and Eva M. Perasso 2000 Trust
Lester W. Stevenson, Jr. Trust
Lucille D. Sloan Trust
Paul Edwin Melcher
Mae C. Clegg Trust
Faith E. Messick
Margaret D. Lienemann Charitable Trust Mary C. Holman Trust
Minow 1999 Charitable Lead Trust
Daniel F. North
Miriam C. Goldman Trust
Paul J. Hillman Insurance Remainder
Richard G. Prins Anne S. Rennie
Raymond W. Carlin Family Trust
Kniffin Charitable Remainder Trust
William J. O'Brien Trust
Hudson Charitable Trust
Virginia N. Lowry
Lucille L. Miller
The Melba M. O'Connell Trust
PEOPLE Board of Directors
Scientific Advisory Committee
J. Timothy Greenamyre, M.D., Ph.D. Oleh Hornykiewicz, M.D. J. William Langston, M.D. G. Frederick Wooten, M.D. Anne B. Young, M.D., Ph.D.
Page Morton Black Chairman Lewis P. Rowland, M.D. President Timothy A. Pedley, M.D. Vice President Stephen Ackerman Treasurer Isobel Robins Konecky Secretary Stanley Fahn, M.D. Scientific Director
Directors Constance Woodruff Atwell, Ph.D. Karen Elizabeth Burke, M.D., Ph.D. Margo Catsimatidis Barbara Costikyan Peter Dorn George Pennington Egbert III Stephen B. Flood, Esq. Sarah Belk Gambrell Daniel Gersen, Esq. Stephanie Goldman-Pittel Arlene Levine Marshall Loeb Howard DeWitt Morgan Marie D. Schwartz Domna Stanton, Ph.D. Sandra Feagan Stern, Ed.D. Melvin S. Taub Martin Tuchman
People with Parkinson's Advisory Council Carey Christensen Joy Dryfoos David Eger, Ph.D., Co-Chair Melinda Hermanns, Ph.D. Rhona Johnson Daniel Kiefer, J.D. Jo-Anne Lazarus, Ph.D. Meredith Mucha, M.D. Michael O'Leary Lillian Snyder* Joanna Steichen, M.S.W.* Bruce Talbot* Ann Wasson, Co-Chair * deceased
Executive Director Robin Anthony Elliott
The quilts included in this publication were created by people living with Parkinson’s disease for the Parkinson’s Quilt and are part of PDF’s Creativity and Parkinson’s Project. This initiative seeks to explore, support and encourage the possible therapeutic value of creativity in Parkinson’s disease.
Quilt Credits: Cover Lois Gwinn; Page 2 Lois Gwinn; Page 4 Carolyn Weimer; Page 6 Joan Engel; Page 10 Portuguese PD Association; Page 14 Julia Huestis; Page 18 Lynne Stefanetti; Page 20 Lisa Longacher; Inside Back Cover (left to right) Lois Gwinn; Carolyn Weimer; Joan Engel; Portuguese PD Association; Julia Huestis; Lynne Stefanetti; Lisa Longacher
Image Credits: Page 6 Modified from Matsuda et al. Journal of Neuroscience, 2009; Page 7 Mark R. Sullivan; Page 14 Courtesy of Dr. Scott Small; Page 20 Janet Charles; Page 21 Patrick McMullan Company (top); Pete Philomey, PpP Photography (bottom)
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Parkinson's Disease Foundation Annual Report 2010