PLATINUM2023

American Parkinson Disease Association

Strength in optimism. Hope in progress.

aka APDA   |   Staten island, NY   |  http://www.apdaparkinson.org

Mission

Every day, we provide the support, education, and research to help everyone impacted by Parkinson's disease live life to the fullest.

Ruling year info

1963

President & CEO

Ms. Leslie A. Chambers

Main address

PO Box 61420

Staten island, NY 10306 USA

Show more contact info

EIN

13-1962771

NTEE code info

Neurology, Neuroscience (G96)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

APDA's mission is to provide the support, education, and research that will help everyone impacted by Parkinson's disease live life to the fullest. APDA’s three-year Strategic Plan guides our work every day. It keeps us focused on our mission, centered on our priorities, and driven by what matters most – serving and supporting the Parkinson’s disease community.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Information & Referral Centers

Provide free support, physican and service referrals, educational materials and programs for persons with PD and their care partners.

Population(s) Served

The American Parkinson Disease Association (APDA) proudly invests in the most promising clinicians and scientific projects focused on the discovery of the cause(s) and finding the cure(s) for Parkinson’s disease (PD). APDA is committed to scientific research and has been a funding partner in many major PD scientific breakthroughs, investing more than $55 million in research since 1961. Many APDA-funded researchers have successfully leveraged pilot data to secure multi-million dollar grants through the National Institutes of Health and other funding partners.

Population(s) Served

APDA aims to educate people about Parkinson's disease through our extensive website, library of publications, in-person and online educational webinars and symposiums, and more. Our credible and reliable information is available 24/7 to help anyone impacted by PD -- from the newly diagnosed to care partners dealing with advanced disease. Almost all publications are available in both English and Spanish, with several also available in Simplified Chinese. Our APDA Chapters and Information & Referral Centers across the country are the providing critical support, programming, and information in local communities.

Population(s) Served

The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $226 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease. In addition to raising awareness about PD through our website, webinars, publications, Chapters and staff across the country, we also provide infromation for specialized populations including Veterans, Young Onset, Care Partners and Spanish-speaking communities. APDA has also created specific training programs for First Responders and Fitness/Wellness Professionals so they can better care for the PD population.

Population(s) Served

Where we work

Awards

Silver 2016

Telly Award

Affiliations & memberships

Telly Award 2017

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of support groups offered

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Support groups are available both in-person and virtual, but post-Covid, more support groups are taking place in person again. More than 39,400 participants.

Number of exercise classes hosted for people with Parkinson's disease.

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Hosted more than 925 in-person and virtual exercise programs specifically for people with PD. More than 62,550 participants.

Number of participants in educational programs.

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Nationwide educational programs held in-person and virtually.

Number of educational publications distributed.

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

APDA provides free publications available for download or hard copies sent via mail. Available in English, Spanish, and Simplified Chinese.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

To provide the support, education, and research that will help everyone impacted by Parkinson's disease live life to the fullest.

GOAL 1:
Expand constituent-centric, evidence-based, and impactful programs, services, and research that improves quality of life throughout the disease continuum.

GOAL 2:
Cultivate partnerships and collaborations to expand and elevate mission delivery to meet Parkinson community needs.

GOAL 3:
Expand reach to under-served, under-studied and under-represented communities to promote health equity, and access to care, and provide education and support.

1. Deliver Programs and Services – Provide innovative signature programs and services to all impacted by Parkinson's across the disease continuum and increase program participation annually
2. Leverage our grassroots, community-based network to ensure comprehensive delivery of the four key components of our mission (health & wellness, education, information & referral, and research) to increase PD awareness and engagement.
3. Support Parkinson's Disease Research – Increase APDA research funding allocation by at least 20% annually and advance research efforts in Parkinson's through continued advocacy, collaboration and funding of the most promising clinicians and scientists
4. Increase Public Awareness of Parkinson's disease and APDA – Increase the public's awareness of Parkinson's disease as a major health issue, and of APDA as a leader in the Parkinson's disease arena, by broadening the reach of APDA messaging
4. Increase Revenue to Support Mission Delivery – Expand mission delivery and broaden organizational impact through at least revenue growth in all fundraising campaigns and initiatives

APDA is the largest grassroots network dedicated to fighting Parkinson's disease (PD) and works tirelessly to assist the more than 1 million people in th United States with PD. APDA's nationwide network features Chapters located across the United States that serve as the first place to go after diagnosis as a source of support and education throughout the PD journey. APDA also has Information & Referral (I&R) Centers that provide support to people with PD and their families by providing a center and dedicated Coordinator in local medical institutions that provide the gold standard in PD services. APDA uniquely delivers education, support, and patient services to people with Parkinson's and their families each day.

APDA publishes more than 50 brochures and pamphlets available at no cost to the public, most of which are also available in Spanish, and several in Simplified Chinese. APDA focuses on developing educational materials that address the clinical and psychosocial symptomatology of Parkinson's disease and offer guidance and information for coping with the disease. All materials can be downloaded from our website on our Download Publications Page or may be ordered in hard copy and mailed to you for free.

On the research front, APDA proudly invests in the most promising clinicians and scientific projects focused on the discovery of the cause(s) and finding the cure for Parkinson's disease (PD). APDA is committed to scientific research and has been a funding partner in most major Parkinson's disease scientific breakthroughs, investing more than $55 million in research since 1961. Many APDA-funded researchers have successfully leveraged pilot data to secure multi-million dollar grants through the National Institute of Health.

APDA's focus is to bring the best new talent to the field of PD research through grant programs.

APDA's eight Centers for Advanced Research are located in major academic and medical centers across the country and are intended to strengthen and help to integrate already existing investigative teams. These Centers receive funding to support large research programs which include: research trainees; fellowship programs; early stage discovery programs and later stage clinical translation. These Centers facilitate research which is at the forefront of investigation into the causes, treatments and ultimately the cure(s) for Parkinson's disease.

Through Fiscal Year 2021, APDA has raised and invested more than $226 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of Parkinson’s and ultimately put an end to this disease.

Of the $226 million, more than $170 million has gone to patient services and education, and nearly $55 million has been invested in research funding.

In FY21, more than 23,000 people participated in our educational programs. More than 71,000 took advantage our of ouany in-person and virtual exercise programs. More than 44,000 attneded APDA support groups. More thna 8,500 have downloaded the free APDA Symptom Tracker app to help them better keep track of their symptoms and report them to their doctors.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • 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

  • 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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

American Parkinson Disease Association
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

American Parkinson Disease Association

Board of directors
as of 08/22/2023
SOURCE: Self-reported by organization
Board chair

Thomas Penett

Lahr, Dillon, Manzulli, Kelley & Penett, P.C.

Term: 2021 - 2022

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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 ? Not applicable
  • 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? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 5/25/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 06/01/2023

GuideStar 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

Data
  • 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 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.
Policies and processes
  • 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.