For the past 16 years, local organizations and leaders throughout the US, Canada, and beyond have collaborated with us to host The Victory Summit event for their Parkinson’s communities. Everywhere we went, we asked ourselves the same questions:
- What is our role here?
- How can we support these local efforts?
- What barriers exist here to reach more people with the tools, information, and resources needed to live well with Parkinson’s?
We know now that 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. Therefore, we designed our Healthy Parkinson’s Communities initiative to address these needs together and help communities go farther than they could alone.
Using what we’ve learned from 16 years of creating educational tools and resources and building grassroots initiatives and events, we are excited to invite local leaders to join to make the places we live, work, and play more inclusive and supportive for those living with Parkinson’s.
The resources, tools, and programmatic efforts we create for this initiative will focus on three key areas:
#1 – Ensure Parkinson’s community leaders have the knowledge and resources they need to make a positive and sustainable change in their community
Nothing happens without the power of the collective, which is why this focus area tops our list. We will support this need through professional development and peer-learning opportunities for advocates, volunteers, and community leaders. Additionally, we will encourage and help facilitate broader community engagement and collaboration through Community Action Committees, a collaboration model that has already proven successful.
#2 – Encourage and support data-informed initiatives designed to increase access to and engagement with resources that improve the quality of life for people with Parkinson’s
To affect change, you must know what needs changing in your local area. Throughout the next year, we’ll share tools, ideas, and best practices to help community organizers determine their goals and then mine the current data to help them achieve them. We’ll also launch the Healthy Parkinson’s Communities grants program to help new and existing initiatives take hold and expand.
#3 – Work with communities to raise awareness of Parkinson’s in their areas
It’s going to take all of us to create a world where every person with Parkinson’s can live well. Through Healthy Parkinson’s Communities, we will address health disparities and issues of belonging by focusing on creative ways to increase awareness, access, and health literacy.
In addition to encouraging these ideas to develop through the community coalitions and community grants described above, we will continue to create resources and learning opportunities, like our Health Disparities and Parkinson’s webinar series, and highlight stories like this one from Dr. Claudia Martinez on our blog.
After a year of so much isolation that highlighted the seriousness of health inequities, we are more inspired than ever to do this work. “What is our role here? How can we support these local efforts?” We’re still asking those questions. But as always, we must respond to “today” by acting now.
We look forward to taking on this work in partnership with communities everywhere.
What do you think?
We’d love to know: What role could a Healthy Parkinson’s Communities initiative play in your area? What resources do you have in abundance, and what resources do you need? Please feel free to share in the comments.