GOLD2023

DAVIS PHINNEY FOUNDATION FOR PARKINSON'S

We help people with Parkinson's live well TODAY.

aka Davis Phinney Foundation   |   Louisville, CO   |  www.dpf.org

Mission

We provide programs and resources that offer inspiration, information, and tools that enable people living with Parkinson’s to take action that can immediately improve their quality of life. Through The Victory Summit® virtual event series, Every Victory Counts® manual, Ambassador Leadership program, Healthy Parkinson’s Communities™ initiative, funding of quality of life research, and extensive online content, we impact hundreds of thousands of individuals each year.

Notes from the nonprofit

The words inspiration and Parkinson’s don’t typically go together. The truth is, Parkinson’s can strip people of momentum and hope. The Davis Phinney Foundation is committed to helping people living with Parkinson’s and their caregivers find new ways to live well today. We are constantly looking for ways to motivate and inspire, to fill the information gaps for people who live with this disease day in and day out, and to provide tools that help people engage and improve their lives.\r\n\r\nAnd in the process, we ourselves are continually inspired. Each day we meet people exploring new ways to live better with the disease. We’ve met people who are climbing mountains, running marathons, and even riding their bikes across the country. And we’ve met people who find their personal moments of victory walking around the block or putting the finishing touch on a hand-made quilt. In the end, it’s not the size of the victory, but the recognition of it that counts. It’s the motivation behind it. The inspiration it can provide to others.\r\n\r\nIn the end, it’s about how lives can be improved today, and that is a victory in itself.

Ruling year info

2004

Executive Director

Polly Dawkins

Main address

357 S. McCaslin Blvd Ste 105

Louisville, CO 80027 USA

Show more contact info

EIN

20-0813566

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Specifically Named Diseases (G80)

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

SOURCE: Self-reported by organization

Parkinson's Disease is the fastest growing neurodegenerative disease in the world. Over 60,000 new cases are estimated to be diagnosed in the USA each year. Recent studies show the economic burden of PD in the U.S. in 2017 was $51.9 billion, including a direct\nmedical cost of $25.4 billion and an additional $26.5 billion in indirect and non-medical cost. The increasing prevalence of Parkinson's combined with the economic burden necessitates scaling public health, support systems and educational resources to reach the growing number of people and families affected and to help them maintain or achieve health, productivity and a quality of life while living with the disease.

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?

Healthy Parkinson's Communities™

Healthy Parkinson’s Communities™ is a new initiative led by the Davis Phinney Foundation to help support community leaders, volunteers, and advocates in the pursuit of making the places where we live, work, and play more inclusive and supportive for those living with Parkinson’s.

Population(s) Served
Seniors
Adults

The Every Victory Counts® manual is designed to help people living with Parkinson's manage their disease and improve their quality of life. This indispensable volume was developed by movement disorder neurologists and other specialists in collaboration with the Davis Phinney Foundation.

More than 60 people with Parkinson's contributed their personal stories and insights to the volume. The manual provides comprehensive information with worksheets and assessments that people can use to facilitate dialogue with their healthcare team and take a more proactive role in their own treatment. It presents timely, accurate clinical discussion and data alongside first person accounts that lend context and relevance to the topics covered. The interactive format is inviting and easy to use, encouraging readers to engage with it again and again, as their concerns change over time.

Population(s) Served
Seniors
Adults

The Living Well Challenge™ is an educational webinar series featuring movement disorder experts speaking on topics of interest to people affected by Parkinson’s disease. You can “take the challenge” to live well today with Parkinson’s by viewing the webisodes, discussing your own experiences and impressions with family, friends and support group, and devising your own action plan to help you:

•Be Informed and Be Aware
•Be Active
•Be Involved
•Be Connected

Take the next step. Take action after watching the webisodes. Make your own Living Well Pledge right now by downloading your own pledge card to print at home. Write down one thing you will do to live well today. Stick it on your mirror. Post it on your fridge. Share it with your care partner. Make it real.

Population(s) Served
Adults

Parkinson's Exercise Essentials: Getting Started, Staying Motivated, Seeing Results developed by the Davis Phinney Foundation, this first-of-its kind video provides a range of workouts that can be modified for any level of fitness, from beginner to advanced, and can be performed at home, in a fitness center or out in the community.

More than an "exercise along" video, this program goes one step further and provides a road map that will teach you how to safely progress exercise activities over a period of years in order to help you stay motivated and derive the greatest benefit from your workouts.

The goals of this new program are to respond to people with Parkinson's inquiry "how does one exercise for Parkinson's?", to motivate them to integrate exercise into their therapeutic approach and to position the Davis Phinney Foundation as the thought leader on exercise as a means for living well today with Parkinson's.

In this DVD, Matthew P. Ford, PT, PhD from The University of Alabama at Birmingham provides the guidance to help people with Parkinson's get started with fitness and shares a range of exercise approaches drawn from a broad body of research and from his deep experience working with members of the Parkinson's community.

Thirteen men and women of different ages, living with various stages of Parkinson's disease, demonstrate a range of exercise routines and share their inspiring personal stories, offering encouragement and first-hand insight into getting started and sticking with it.

Population(s) Served
Seniors

The Davis Phinney Foundation funds research aimed at discovering the most promising therapeutics and lifestyle choices that promote living well with Parkinson's disease today and every day. We fund early-phase, innovative studies that focus on exercise, speech, movement and other factors that affect quality of life. Our goal is to generate pilot data that demonstrates proof of concept, which leads to future funding by the National Institute of Health and others. Annually, 10% of our budget goes to fund innovative Research aimed at improving the quality of life for people with Parkinson's. We fund early-phase, innovative studies that focus on exercise, speech, movement and other factors that affect quality of life.

Population(s) Served
Seniors
Adults

Ambassadors share our resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson’s.

Our ambassadors are advocates for living well and are available to discuss tools and strategies for improving quality of life with support groups, individuals, families and healthcare professionals. Ambassadors speak on the subject of wellness at local Parkinson’s events and support groups, and they also meet one-on-one with individuals and families.

Population(s) Served
Adults
Seniors

Where we work

Awards

Champions of Change - Davis Phinney 2015

White House

The Parkinson's in Pride Award 2011

Foundation for Neuroscience - Parkinson's in Balance Program

Alan Bonander Parkinson's Community Humanitarian Award 2014

Parinson's Unity Walk

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

The Davis Phinney Foundation has two major goals. The primary goal of the organization is to be an outreach and educational resource with a particular focus on improving quality of life for those living with Parkinson’s disease today, and a secondary goal is to support the development of strong connections within and among the Parkinson’s community. To accomplish both goals, the Foundation develops programs, invests in materials, and supports research that encourage health and wellness activities for people living with Parkinson’s disease.

Develop comprehensive “curricula” on critical living well topics that serve as the best-in-class resources\r\n\r\nExpand delivery of resources with emphasis on internet based applications\r\n\r\nFoster a dynamic online community\r\n\r\nContent Competency\r\n\r\nDevelop informed direction and content by:\r\n\r\n1. Create opportunities for people to share their voice through formal and informal channels\r\n\r\n2. Conduct primary research and learning from existing research on what people with Parkinson’s need and want 3. Maintain and forge new relationships to understand and incorporate existing research and tools\r\n\r\n4. Build strategic partnerships to better understand how to meet informational gaps

Through best-in-class information and connection to one another, we move our tribe into action. We nudge, bolster, encourage, inspire…and explicitly challenge people to take action to be better.\r\n\r\nWe invent in response to needs. Our inspiration is drawn from a deep understanding of our tribe, from trends in the world at large and from a desire to develop creative, engaging solutions.\r\n\r\nWe measure our efforts against business objectives, data and performance indicators. Externally, we will give our constituents resources and tools that are designed to deliver results (quality is implicit – what we do is effective and it works).\r\n\r\nWe embrace our place in a larger world, that of Parkinson’s and beyond. We have a kinship with those we serve and others that share our mission. We build communities, making them stronger, connecting them, creating bridges, keeping people connected.\r\n\r\nWe focus on wellness and quality of life. We encourage those we serve and our own staff to care for themselves and be the best they can be.\r\n\r\nA deep interest and commitment to our work and the people we serve fuels our ideas, contributes to our workplace atmosphere and provides the energy that comes through in our programs and in our brand personality. We are passionate about what we do and the impact that we have on our communities.

Based on our organization's metrics, our impact / progress is as follows:\n\nNumber of people who received the Every Victory Counts manual: 13,627\n\nNumber of people who attended our Victory Summit symposia: 10,209\n\nNumber of people who viewed our Living Well Challenge webinar series: 67,540\n\nNumber of people who learned about our tools and resources through collaborative efforts, such as Partners in Parkinson’s, Support Group meeting presentations and regional Parkinson’s community education seminars: 7.287. In addition, 500,000+ visitors sought information about our programs and resources from our website.

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?

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

Financials

DAVIS PHINNEY FOUNDATION FOR PARKINSON'S
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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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DAVIS PHINNEY FOUNDATION FOR PARKINSON'S

Board of directors
as of 03/28/2023
SOURCE: Self-reported by organization
Board chair

Susan Helm-Murtagh

Connie Carpenter-Phinney

No Affiliation

Glen Sibley

Fleisher Smyth Brokaw

Kara Beasley

Boulder Neurosurgical & Spine Associates (BNA)

Stephen Chase

Kevin Kwok

David Leventhal

Helen Bronte-Stewart

Kara Beasley

Erica Borenstein

Polly Dawkins

Davis Phinney Foundation, Executive Director

Wissam Deeb

Brandon Halcott

Susan Helm-Murtagh

Soania Mathur

Davis Phinney

Pete Schmidt

Darcy Taylor

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 ? No
  • 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? No