Parkinson's Foundation, Inc.
Better Lives. Together.
Mission
The Parkinson's Foundation makes life better for people with Parkinson's disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience, and passion of our global Parkinson's community.
Notes from the nonprofit
The Parkinson's Foundation was formed by the merger of the National Parkinson Foundation (NPF) and the Parkinson's Disease Foundation (PDF), both established in 1957, with offices in New York and Miami. Connect with us today. We are here to help. Miami Office: 200 SE 1st Street Suite 800 Miami, FL 33131 New York Office: 1359 Broadway Suite 1509 New York, NY 10018 Contact our toll-free Helpline at 1-800-4PD-INFO (473-4636) or [email protected] Local chapter information can be found at: https://www.parkinson.org/get-involved/local-resources
Ruling year
1959
President and CEO
Mr. John L. Lehr
Main address
1359 Broadway Suite 1509
New York, NY 10018 USA
EIN
13-1866796
NTEE code
Neurology, Neuroscience (G96)
Neurology, Neuroscience (H96)
Health Support Services (E60)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
More than one million Americans are living with Parkinson's disease (PD), 60,000 more are diagnosed annually, and 7,000 people with Parkinson's die prematurely every year in the U.S. because of inadequate medical care. People with Parkinson's can live decades with the disease. That is why the Parkinson's Foundation is accelerating our funding for research that will ultimately find the cause of Parkinson's and develop methods to treat and manage it.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Ensuring Better Care for Everyone
Today, only 10% of people diagnosed with Parkinson’s in the United States are receiving the best care. That is unacceptable. The Parkinson’s Foundation is accelerating its efforts to address this inequity so people with Parkinson’s get the care they need, wherever they live.
Providing state-of-the-art care through our global network
To ensure the best care and consistency of treatment for Parkinson’s patients, the foundation has certified 42 premier treatment and research centers worldwide. These Centers of Excellence are renowned for outstanding performance in Parkinson’s research, care and outreach. Over the next few years, we will significantly increase the number of Centers of Excellence in the network, greatly expanding our overall coverage, and facilitate innovative solutions like telemedicine care to reach the 90% of people who are not receiving care from trained specialists.
Training professionals to provide expert care
Responding to a nationwide shortage of trained specialists, we are closing the gap in PD professional training by educating physicians, nurses, physical therapists, occupational therapists, speech language therapists and social workers. The next generation of healthcare professionals must be equipped with the knowledge and skills necessary to provide comprehensive care with a focus on the specific needs of individuals living with PD.
Understanding Parkinson’s through Research
Funding the best and brightest scientists to help us
The most innovative ideas and creative research initiatives often come from new investigators. The foundation currently invests nearly $10 million annually in the most promising research. Not only are we working to understand the cause and progression of Parkinson’s, we are also attracting talented scientists to a career in Parkinson’s research and funding more investigators to start careers working on Parkinson’s.
Investing in new frontiers and discovery
We identify and address the unmet needs of people with PD by driving cutting-edge research. Our research agenda includes studying the genetic factors, environmental factors and the gut-brain connection, where PD may originate. We must continue to provide crucial funding to innovative scientists and groundbreaking research.
Assembling the largest clinical study of Parkinson’s
The Parkinson’s Outcomes Project is the largest and most comprehensive Parkinson’s clinical study ever undertaken. Our work provides researchers and physicians with a comprehensive view of the disease and its overall impact on people’s lives. The study follows more than 10,000 patients in four countries. We will continue to enroll even more participants to track changes over time and establish a “gold standard” for treating Parkinson’s patients. Through this study, we have shared key findings on the importance of being screened for depression annually and engaging in 2.5 hours of exercise per week for a better quality of life.
Educating and Empowering the Parkinson’s Community
The Parkinson’s Foundation toll-free Helpline, with the capacity to respond to both English and Spanish speaking callers, provides critical information to people living with PD, caregivers and family members. The Helpline also allows us to alert the community about important research findings, medicine shortages, adverse drug interactions and much needed advice—in real time. Our team of highly-trained Parkinson’s specialists speak with nearly 30,000 people annually. In the coming year, we will expand the hours of the Helpline to better serve the Parkinson’s community and offer support in more languages.
We help people live well with PD by providing families with free resources including: our life-saving hospitalization kit, “Ask the Doctor” online forums, educational books, videos, webcasts and smartphone apps. These tools empower people living with PD to be more involved with the management of their disease and improve their quality of life.
The Parkinson’s Foundation puts people living with the disease first. We are the first organization to train people with PD to partner with scientists on research and to form a national advisory council of people with Parkinson’s to ensure more efficient and effective research.
Where we work
External reviews
Photos
Our results
How does this organization measure their results? It's a hard question but an important one.
Total dollar amount of grants awarded
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
$340,000,000 invested in Parkinson's research and care since 1957
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Educating and Empowering the Parkinson’s Community
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
4.7 million visited Parkinson.org, the go-to Parkinson's resource, in 2020
Number of volunteers
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Educating and Empowering the Parkinson’s Community
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The Parkinson's Foundation makes life better for people with PD by improving standards of care and advancing research toward a cure. We are rallying researchers, physicians, clinicians, therapists, people with Parkinson's and their families in support of the entire Parkinson's community.
Foundation-supported scientists are working aggressively to identify the underlying mechanisms of the disease—a critical initial step to developing new therapies and treatments. Only by knowing how PD works within the brain and throughout the body can we develop new drugs that prevent, stop or ultimately cure the disease.
For those currently struggling with Parkinson's, it is imperative that we make progress today. The Parkinson's Foundation is the leader in ensuring better medical care; educating and empowering the Parkinson's community; and driving the understanding of Parkinson's through research. These guiding pillars of our work will allow us to take a chronic, degenerative disease and give people hope of independence and quality of life.
What are the organization's key strategies for making this happen?
As a national organization with a local presence and impact, the Parkinson's Foundation brings help and hope to the estimated one million individuals in the United States, 10 million worldwide, who are living with Parkinson's.
Ensuring Better Care for Everyone
• The Parkinson's Foundation sets standards for expert Parkinson's care through its global network of 42 Centers of Excellence.
• The Foundation improves the quality of life for people with PD by tracking the care that they receive at its centers. Nearly 10,000 patients are enrolled in the Parkinson's Outcomes Project, the largest clinical study of PD. According to the Foundation's study, regular Parkinson's treatment from a neurologist could save thousands of lives each year.
• The Foundation is working to close the gap in Parkinson's professional training by educating nurses, physical therapists, occupational therapists, speech language therapists and social workers so they can provide better care.
Educating and Empowering the Parkinson's Community
• The Parkinson's Foundation educates and empowers people with PD through its national network of staff and volunteers. The foundation was the first organization to form a Parkinson's advisory council and the first to train people with PD to partner with scientists on research.
• The Parkinson's Foundation helps people live well with PD by providing free resources including: educational books, webinars, podcasts, a life-saving hospitalization kit, and the toll-free Helpline, staffed by Parkinson's specialists who answer nearly 30,000 calls annually.
• The Parkinson's Foundation brings local communities together through Moving Day®, A Walk for Parkinson's, a national grassroots event that has raised $14 million to support Parkinson's research and local wellness programs across the country.
Understanding Parkinson's through Research
• The Parkinson's Foundation invests more than $10 million annually in promising scientists who are on a mission to understand the basic mechanisms of Parkinson's that are critical to developing new treatments and medications.
• The Parkinson's Foundation recruits the most talented minds in Parkinson's research by supporting early career scientists in neurology who might choose other fields of study.
• The Parkinson's Foundation identifies and addresses the unmet needs of people with PD by driving cutting-edge research on a wide range of patient-driven topics.
What are the organization's capabilities for doing this?
The challenges of living with Parkinson's disease, improving care and finding a cure can seem overwhelming. No individual or group can go it alone.
We are the Parkinson's Foundation. A community. An alliance. A movement. Where people living with Parkinson's, families, caregivers, scientists, advocates, donors and volunteers join forces to improve lives and advance toward a cure
What have they accomplished so far and what's next?
For over half a century, we've made tangible progress on all fronts, from the largest clinical study of Parkinson's ever, which has significantly improved care, to breakthrough treatments. Today, we continue to:
-Provide life-changing support to people living with Parkinson's and their caregivers
-Fund game-changing research on treatment and care
-Convene the best minds from every corner of the global Parkinson's community to find new approaches that enhance care and move us closer to a cure.
Everything we do is based on experience and informed by facts. The people we serve deserve nothing less than the highest level of support based on validated research and deep encouragement grounded in reality. Our donors and volunteers need to know that we are 100% accountable. This is why we focus on verifiable outcomes, not vague promises.
In partnership with the entire Parkinson's community, we are making a real difference in people's lives. And we have the research, the data – and the stories – to prove it. This is what happens when we all pull together as one global, determined and inspired movement. Better Lives. Together.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
There are over 1 million people with Parkinson’s disease in the United States and 60,000 more are diagnosed each year. The Parkinson’s Foundation is a nationwide organization with 17 chapters throughout the country. We provide a variety of programs for people with Parkinson’s and their care partners as well as trainings for healthcare providers who work with this population. The Foundation also funds researchers nationwide who are working vigorously to improve therapies and ultimately find a cure for Parkinson’s.
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How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,
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What significant change resulted from feedback?
The COVID-19 pandemic has had a great impact on the Parkinson’s community. Without access to in-person community-based exercise and wellness classes, the community was at risk of increased isolation, inactivity, mental health issues and decreased quality of life. Through feedback from and engagement with the Parkinson’s community about their needs, the Parkinson’s Foundation developed and launched PD Health @ Home, an ongoing series of virtual programs with a focus on relevant Parkinson's topics and wellness activities. Programs are available in English and Spanish and allow people to participate from geographically diverse locations and from the safety of their home.
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With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners,
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How has asking for feedback from the people you serve changed your relationship?
The Parkinson’s Foundation believes that to make life better for people living with Parkinson’s disease (PD), we must hear directly from those living with PD and those caring for them. At the center of these efforts is the People with Parkinson's Council comprised of people with Parkinson’s and care partners who serve as advisors to the Foundation. The Council ensures that the perspective of people living with Parkinson’s is integrated into the Foundation’s program development and priority setting. Another initiative that formally provides insight into the experiences and opinions of the Parkinson’s community is Parkinson’s Foundation Surveys. These efforts have ensured that the Foundation has been better informed in its programming, research, grant funding and policy initiatives.
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback,
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Parkinson's Foundation, Inc.
Board of directorsas of 03/11/2022
Mr. Howard Morgan
Howard Morgan
Partner and Senior Managing Director, Argand Partners
Stephen Ackerman
Executive Director and Financial Advisor, Morgan Stanley Wealth Management
Andrew Albert
Managing Director and Operating Partner of Svoboda Captital Partners, LLC
Constance Woodruff Atwell
Former Director of the Division of Extramural Research at NIH/NINDS
J. Gordon Beckman
President and CEO of InfoSys McCamish Systems, LLC
Marshall Burack
Partner at Kopelowitz Ostrow Ferguson Weiselberg
Karen Burke
Dermatologist and research scientist on the faculties of Mt. Sinai Medical Center and Cabrini Medical Center
Alessandro Di Rocco
Founders Professor of Neurology and Chief, Division of Movement Disorders, Director, The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders (a National Parkinson Foundation Cent
Albert Dosal
Chairman and CEO of Dosal Capital
G. Pennington Egbert
Managing Director, Co-Director of Americas Equity Research at Goldman Sachs
Stanley Fahn
H. Houston Merritt Professor of Neurology and Director Emeritus, Division of Movement Disorders, Department of Neurology at the PDF Research Center at Columbia University Medical Center
Richard Field
Co-Founder of Lending Tree, LLC
Guido Goldman
Director of the Program for the Study of Germany at the Minda de Gunzburg Center for European Studies of Harvard University
Stephanie Goldman
Incoming President of the Jewish Federation of Northern New Jersey and member of the Board of Lighthouse International
Arlene Levine
Chair of the Fund for Women and Girls Philanthropic Breakfast of the New York Community Trust of Westchester County
Mindy McIlroy
Executive Vice President of Terranova Corporation
Robert Melzer
Former President and CEO of Property Capital Trust, Boston and former Chair of the Board of Directors, Beth Israel Deaconess Medical Center, Boston
Gail Milhous
Private philanthropist and community activist
Michael Okun
Adelaide Lackner Professor and Chairman of Neurology, University of Florida Co-Director UF Center for Movement Disorders and Neurorestoration
Timothy Pedley
Henry and Lucy Moses Professor of Neurology at Columbia University and past President of the American Academy of Neurology
Gregory Romero
Vice President of KE Tube, Inc.
Joshua Raskin
Research Analyst, Nephron Research, an independent research boutique focused on healthcare
Peter Goldman
Managing Partner, Lakeshore Sport & Fitness
Marcia Mondavi Borger
Wine industry expert, daughter of wine legend Robert Mondavi, and Co-Founder of Continuum Estate
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 03/11/2022GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
- We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.
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