We spoke to the team at the Davis Phinney Foundation. Rich Cook, Director of Development, and John Dean, a member of the scientific advisory board, discuss their work, what they would like to see implemented for the Parkinson’s community in the USA, and their hopes for the future.

There’s more than one approach

“When very visible public figures like Muhammad Ali, Michael J. Fox, and Davis Phinney come forward and tell their story, it creates more visibility and awareness”. For Rich and John, this awareness is key to their work. Started in 2004 by cyclist and Olympic Bronze medallist Davis Phinney, the Foundation has grown to become one of the foremost Parkinson’s foundations in the United States.

Rich and John both came into contact with the foundation through other roles. Rich had previously worked with other non-profit organisations, and got to know Davis Phinney when they collaborated on a project that aimed to show those with Parkinson’s the benefits of skiing. John began his collaboration with the Foundation in 2008 when helping with fundraising, and has gone on to serve in a number of roles, including providing insights and advice on emerging technologies such as the CUE1. Both agree that the organisation’s approach to Parkinson’s – looking at ways to improve the lives of the community immediately, instead of waiting for a cure – was a big part of what attracted them. “Not that trying to find a cure is the wrong approach”, John assures us, “it’s just that it’s not the only approach. There are a a lot of thing you can do right now to improve your quality of life and that’s where the Foundation’s mission of ‘helping those living with Parkinson’s to live well today’ really comes to the fore”.

There’s no way I’m sitting still

Exercise was a large part of the foundation’s initial focus. Being a professional athlete, Davis Phinney found it hard to sit still and rest, despite this being the advice of his doctors. “They didn’t have an understanding of how beneficial exercise was at that time”, Rich says. “Davis thought, ‘there’s no way I’m sitting still’, and so he stayed active, and began the foundation as a way to fund research into the benefits of exercise for those with Parkinson’s”.

Since then, the Foundation has grown rapidly. “We have over a million users of our resources every year, whether that’s in digital or print media, as well as partaking in our education and community programs and interacting with the foundation”. This impressive growth has helped innumerable people in the United States and around the world, and has heartily contributed to the growing body of research into Parkinson’s. The foundation has also served to raise awareness of the condition across the nation and through partnerships in Canada.

Nevertheless, there is still much work to be done to help those with Parkinson’s in the United States. “We listen to our community, and have found that in rural areas, there is simply less access to neurologists, specialists, and other crucial services”, Rich tells us. “As we come out of the COVID pandemic, we find that people are more and more isolated, and we need to find ways to reverse this”. The healthcare system in the USA is often a postcode lottery for the Parkinson’s community, with those in poorer and more rural areas disproportionately lacking access.

Connecting with these communities is crucial for the Davis Phinney Foundation, ensuring that no one has to go without crucial information or treatment. Their online outreach has numerous resources available. Nevertheless, Rich and John are clear that “‘boots on the ground’, actually getting out to these communities, talking to them, that’s the most important thing”.

Rich and John are also excited about  research  in Parkinson’s, including new developments and devices . “Medication and things like Deep Brain Stimulation are important, but having access to all of these new treatments helps to personalise someone’s care”, John notes. “I’ve seen devices that use non-invasive stimulation, external stimulation. I think these treatments are going to be very valuable in the future”.

Striving to build capacity

The Foundation is always looking to the future to help the Parkinson’s community. Their work hinges upon engagement with the communities across the United States; no group is too small or too large for the foundation to work with. “We’re striving to build capacity, […] so that these local organisations, in cities and towns across the country and around the world, have a formula to follow”, John tells us. “They also know that they have an organisation like the Davis Phinney Foundation behind them, helping them with anything, whether it be with advocacy issues, education issues, or structural issues such as accessing healthcare resources”.

The Davis Phinney Foundation has planned several events across the USA in the next few years, with the aim of “connecting more with the community at large. We’ll be bringing together our partners like Charco and others from the industry, in order to meet the groups that make up our community. We want to push out good information about how you can live well today, and how you can improve your quality of life”. In addition to the Foundation’s flagship Victory Summits, hosted throughout North America since its founding, they are rolling out ‘Healthy Communities’ initiatives to provide underserved advocates with the tools for helping their communities to live well, with programs scheduled into 2024. These events are sure to bring valuable resources, support, and information to groups across the United States, helping to improve the lives of those with Parkinson’s.

Getting the tools to people who need them

In September 2022, Charco attended the Davis Phinney’s Leadership conference. We met with leaders from various Parkinson’s community groups, healthcare professionals, and industry leaders. We got to learn more about how we can collaborate together to bring more smiles to people with Parkinson’s.

As Charco and the Davis Phinney Foundation continue to work together to improve the quality of life for those in the Parkinson’s community, we’re excited to see what the future holds for the Foundation. As they work toward raising awareness and strengthening their ties with local groups around the United States, Rich and John’s optimism is infectious. It’s clear that the  determination of those in the Foundation to help those with the condition, alongside their  enormous respect for local groups, has helped grow the foundation from one Olympic athlete to one of the foremost Parkinson’s organisations in North America.

“The Davis Phinney Foundation has been focusing on ways to improve how people live with Parkinson’s since their founding almost 2 decades ago. Charco Neurotech’s non-invasive and non-pharmacological approach capitalises upon recent research advances in focused vibrotactile stimulation to provide immediate but lasting benefits.  This new partnership between the two organisations will help get these tools to the people who need them in the US as well as Canada (and beyond). This fits directly within the Davis Phinney Foundation’s primary mission of helping people living with Parkinson’s to live well today. I couldn’t be happier to see these two organisations working together.” – John Dean, MA, CCC-SLP

Thank you to Rich and John for talking to us. Please click here to find out more about the Davis Phinney Foundation, and please click here to download their booklet, ‘Every Victory Counts’.