Parkinson's Resource Organization, Inc.
Working so no one is isolated because of Parkinson's
Programs and results
What we aim to solve
Our programs
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.
Emotional & Practical Support Groups
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!
Parkinson's Memorial Wall
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.
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
External reviews
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?
A better quality of life for the person with Parkinson's as well as their family members.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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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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
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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
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Operations
The people, governance practices, and partners that make the organization tick.
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
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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
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 directorsas of 01/22/2024
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
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? 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
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: 12/08/2022GuideStar 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 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 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.