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.

We know that so often the needs of those affected by Parkinson’s far exceed the resources available to help them. Most organizations and community leaders we hear from wish they had more hands on deck, more access to financial resources to support initiatives, and more awareness about Parkinson’s in their area. Our Healthy Parkinson’s Communities initiative is designed to address these needs and help communities go farther than they could alone. We aim to:

  • Ensure Parkinson’s community leaders have the knowledge and resources they need to make a positive and sustainable change in their community
  • Encourage and support data-informed initiatives aimed at increasing access to and engagement with resources that improve quality of life for people with Parkinson’s at a grassroots level
  • Work with communities towards increased awareness of and health literacy about Parkinson’s in their areas

Our Health Disparities and Parkinson’s webinar series examines issues related to equity, access, and inclusion and how they affect people living with Parkinson’s. Visit the Healthy Disparities and Parkinson’s webinar series page to see what’s coming up and access recordings of past webinars.

National Partners

Lundbeck Pharmaceuticals Logo

Lundbeck is a global biopharmaceutical company committed to helping people who are living with brain disorders, including Parkinson’s. Lundbeck’s support of the Healthy Parkinson’s Communities initiative aligns with its unique patient-driven culture, and supports the company’s position to raise awareness, prevent stigmatization, and share knowledge about unmet needs and challenges in the treatment of brain diseases.

Supporting Partners

Supernus logo - formerly USWorldMeds
The Healthy Parkinson’s Communities™ initiative welcomes like-minded corporations and foundations to join us and support this work. For more information, download our Healthy Parkinson's Communities™ deck here or contact Jorie Parwani at jparwani@dpf.org.

Healthy Parkinson's Communities™ Blog

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National Engagement Advisory Team

The National Engagement Advisory Team (NEAT) is a group of leaders from national companies and organizations who work to build Healthy Parkinson’s Communities together. Organizations that are part of NEAT are available to help provide local support, participate on local Community Action Committees, and more.

Current Members

David Leventhal, Dance for PD

Cynthia Fox, LSVT Global Inc

Adrian Hutber, CEO, Parkinson Wellness Recovery | PWR!

Andrea Merriam, PMD Alliance

Tom Palizzi, Pedaling for Parkinson’s

Jackie Russel, Delay the Disease

Interested in joining or learning more about NEAT? Please contact Gabby Dimotsantos at gdimotsantos@dpf.org.

FAQ

What is the Healthy Parkinson’s Communities initiative?

Imagine living in a community where Parkinson’s leadership is strong. Where everyone living with Parkinson’s has access to quality care, support, and resources so they can live well with Parkinson’s every day. Where people affected by Parkinson’s have a sense of belonging and purpose, feel seen and supported, and are engaged in civic life. And where having a great quality of life, despite having a chronic illness, is prioritized by ALL. This is the reality we hope to HELP create in communities across the US and Canada.

How does this initiative help people with Parkinson’s?

In the short term, this program will help us to share educational resources like our Every Victory Counts® manual and webinars as well as local resources including support groups, wellness classes, trainings, and more with more people affected by Parkinson’s. In the medium term, this program aims to help local leaders tackle the big barriers that exist to living well including not having access to specialists, not knowing where to turn for support, barriers to diagnosis, and so much more. And in the long run, this initiative aims to support the creation of more inclusive communities for people living with Parkinson’s by addressing awareness, stigma, and health literacy to create more sense of belonging and make it easier for people of all kinds to live well. When one community becomes a Healthy Parkinson’s Community, it is good for the Parkinson’s community as a whole.

Is this a program we can sign up for?

It is not a program. It’s an initiative. Meaning, there’s no single template, model, checklist, or timeline that every community will follow (because every community is unique). Here’s what it might look like to raise your hand and be part of this initiative. You live in a community that isn’t “Parkinson’s friendly” and you want to change that. You form a Community Action Committee (CAC) (more on that below) and help lead the change you want to see. Through that, you gain access to a network of national peers as well as our library of education, tools, resources, training, and expertise so that you can create sustained change in your community making it a healthier place for people with Parkinson’s to live.

What is a Community Action Committee (CAC)?

It is a group of people that is interested in making its Parkinson’s community better. Members of a CAC may include but are not limited to business leaders, doctors, professors, care partners, local Parkinson’s organizations, people with Parkinson’s, allied health professionals, college students, politicians, empty nesters, or advocates. They care about health disparities, access to healthcare, quality of life, social connections, and living well. And, they have the time, desire, and drive to make change happen for their Parkinson’s community.

How does the Davis Phinney Foundation fit into this?

Because we love cycling metaphors, we’ll explain it this way. Imagine the wheel of a bike. The Davis Phinney Foundation is the hub. The hub is the central part of the bike’s wheel, which connects to the wheel’s rim by the spokes. The spokes are the individual communities and their CACs that will eventually connect to the rim, the part of the wheel that actually makes it possible to function. As the hub, we provide all of the spokes (you and your community) with what they need to get started, grow, and create the Healthy Parkinson’s Community they envision.

What kind of resources are available as part of this initiative?

There are many. We aim to provide resources to all types of communities from rural to urban and everything in between. While not exhaustive, here’s a preview of what we’ll offer:

  • Professional development and leadership training
  • Resources to help you take on the work of organizing, collecting data, setting goals, and making them happen
  • Introductions and connections to peers across North America who are working through similar issues so you can share ideas, successes, and tools
  • A national platform to bring attention to your work, success stories, and achievements
  • Opportunities to apply for funding to help you tackle access, health literacy, Parkinson’s awareness, and more through our Healthy Parkinson’s Communities™ grants program
  • Tools and training to help you set a vision and goals for your CAC based on the needs of your community
  • A peer and advocate from the Davis Phinney Foundation you can call on when need help solving a problem, making a connection, or just need some support

What size communities are a good fit for this initiative?

We created the Healthy Parkinson’s Communities initiative to help inspire and support communities of any size—from neighborhoods to states—working to change how people live with Parkinson’s.

If I (we) decide to join this initiative, what will our community look like in a year, three years, 10 years?

In a year, we hope your community will have a solid CAC in place and the community assessments you have completed have provided you with a great plan for tackling some of your biggest issues. In three years, we hope your community either has or is on track to have better access to:

  • Quality Parkinson’s care for everyone
  • Support services and support groups that accommodate all those who need them
  • A central location, physical or digital or both, where everyone affected by Parkinson’s knows where to go to get information on exercise classes, healthcare providers, complementary therapy providers, transportation and housing options, and more
  • Data on what is working and what’s not
  • Strategic plans for growth

In 10 years, we hope your community is a model to others and that you pay it forward by sharing your stories, lessons learned, and advice to other communities that are on the same path.

I’m in. What’s my first step?

This one’s easy. Call or email Gabby Dimotsantos at 720-257-0741 or gdimotsantos@dpf.org.