GOLD2024

Parkinson's Resource Organization, Inc.

Working so no one is isolated because of Parkinson's

aka Parkinson's Resource Organization   |   Indian Wells, CA   |  www.parkinsonsresource.org

Mission

Working so no one is isolated because of Parkinson's.

Ruling year info

1995

Executive Director

Ms. Eileen Lynch

Main address

74785 Highway 111 Suite 208

Indian Wells, CA 92210 USA

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Formerly known as

Children of Parkinsonians

EIN

95-4304276

NTEE code info

Brain Disorders (G48)

Health Support Services (E60)

Nonmonetary Support N.E.C. (P19)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

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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?

The Wellness Village

The Wellness Village is a rigorously-vetted, video-driven, virtual, and totally free directory of local services for folks with Parkinson’s and their caregivers. So far, we’ve partnered with nearly 60 businesses, medical, and homeopathic services. Our directory includes dentists specializing in TMJ (understanding the commonality between TMJ and Parkinson’s symptoms), canine assistance, physical & speech therapists, medical device interventions, hospice services. Key features of the Wellness Village were designed specifically with the Parkinson’s community in mind – and with feedback from our board, community stakeholders, and with the institutional knowledge gained from over 30 years serving the Parkinson’s Community. We hope to curate a comprehensive directory of providers with the highest level of integrity, vetted by our own staff, in every state and eventually worldwide.

Population(s) Served

Our virtual support groups for caregivers and people with Parkinson’s have been a core part of our services for over thirty years. Through dedicated virtual support groups as well as open forums featuring researchers, physical therapists, elder law attorneys, and more, we distribute new information quickly and build a community network that teaches and learns from itself.

The support groups provide solidarity and community to people facing the fight of their lives. Take 'Bob,' for example. Bob attended his first support group ten years into caring for his wife. “I needed some help and an opportunity to vent because I was overwhelmed,” he says. After that meeting, “I was beside myself with excitement about finally finding an organization that had exactly what I needed.”

In March 2020 we moved our support groups to Zoom and saw demand spike – average meeting attendance has tripled in the last three months with attendees coming from as far away as Great Britain and Cameroon!

Population(s) Served
Adults
Families
People with disabilities
People with diseases and illnesses
Adults
Families
People with disabilities
People with diseases and illnesses

Over the years, we at PRO have consistently been asked to create a special place to honor loved ones who’ve lost their battle with Parkinson’s – a place of remembrance and healing for those who are left behind. Our response was the Memorial Wall (https://www.parkinsonsresource.org/the-memorial-wall/). The Memorial Wall is a virtual place to hold the memory of someone who lived with Parkinson’s or Parkinsonisms…and their family members, caregivers, and friends who were touched by Parkinson’s.

The Memorial Wall also creates a repository for family, friends, and business associates to make donations in memory of the departed person. This serves as a compassionate means to honor and carry on their legacy by contributing for those who are living with Parkinson’s and still in need of the education, emotional support, and the practical resources that Parkinson’s Resource Organization provides.

Population(s) Served
People with disabilities
People with diseases and illnesses
Adults
Caregivers
Families
People with disabilities
People with diseases and illnesses
Adults
Caregivers
Families

Where we work

Awards

Public Service Award 2009

California Speech Language Hearing Association

Palm Award 2006

Historical Society of Palm Desert

National Leadership Award 2011

National Academy of Elder Law Attorneys

Outstanding Founder 2019

Association of Fundraising Professionals

Affiliations & memberships

Chamber of Commerce 2013

Chambers of Commerce 2022

Association of Fundraising Professionals 2022

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.

A better quality of life for the person with Parkinson's as well as their family members.

Continue creating and holding support groups, publishing a monthly newsletter, conducting one-on-one coaching, hosting symposia, and other outreach programs. In time we hope to have lectures available on our website available to the constituent any time of the day or night.

We are currently in the Process of creating these features with our current staff and volunteers. With more funding and community support, we could accomplish this much faster

We launched a new website in 2018. We have created the Wellness Village template and have approximately 60 subscribers (Professionals and/or products) in it.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
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 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 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?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

Parkinson's Resource Organization, Inc.
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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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Build 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

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

Parkinson's Resource Organization, Inc.

Board of directors
as of 01/22/2024
SOURCE: Self-reported by organization
Board chair

Ms Jo Rosen

Parkinson's Resource Organization

Term: 1990 - 2024

William R. Remery

Elder Law Attorney

Jo Rosen

President

Kaya Kouvenon

Transportation services

Michael Lu

Person with Parkinson's

Matthew Lu

Person with Parkinson's

Richard Katz

K9 Ambassadors

Dr. Howard Cohen

Bridge Hospice

Neil Friedman

Primo International

Jim Lawless

Peace of Mind Retirement Planning

Michael Opell

Emrad Associates

Shon Tomlin

1 Giant Mind

John White

KESQ-TV

John Mason

Brighstart Home Care

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 ? 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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 1/22/2024

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

Leadership

No data

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 12/08/2022

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 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.
Policies and processes
  • 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.