3 Ways to be a Parkinson’s Advocate

How to be a Parkinson's Advocate - Davis Phinney Foundation

Over one million people in the US are living with Parkinson’s today, which is more than the number of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig’s disease (ALS) combined. It’s the fastest-growing neurological disorder, a leading cause of disability in the world, and it’s on track to DOUBLE by the year 2040. 

And that’s just the tip of the iceberg…

  • The National Institutes of Health devotes approximately $3 billion to HIV research, while Parkinson’s receives less than $200 million. (P.S. Approximately the same number of people living with HIV in the US today are living with Parkinson’s. The estimated annual cost for the Parkinson’s community in the US is $16.6 billion.)
  • The average yearly cost of treatment for someone living with Parkinson’s is approximately $19,000.
  • Eighty percent of people living with Parkinson’s in the US are on Medicare.
  • The estimated value of care partner services is $460 billion, yet care partners get no monetary relief. 
  • There are currently 80,000 military veterans living with Parkinson’s.
  • Somewhere between 4-10% of people living with Parkinson’s are under the age of 50.

What does this mean for us? It means that more and more people are living with Parkinson’s, which taxes a variety of health and financial systems, and as this population grows, even more people will be unable to access the care they need to live WELL with it.

So, we have a lot of work to do. And it all starts with advocacy. Here are three simple but high return ways to become a Parkinson’s advocate.

#1 – Participate in clinical trials and surveys

Clinical trials are essential not just for finding a cure for Parkinson’s but for learning how to live well today. Also, when you participate in a clinical trial, you contribute to research that could bring new Parkinson’s treatments to people who need them the most. Some clinical trial participation involves a long-term commitment and can be time-consuming; however, participating in a survey can be as simple as answering a few questions online.

(Note: One of the greatest benefits of participating in a clinical trial is that you will have more frequent and consistent access to Parkinson’s specialists than you usually do.)

Fox Trial Finder

Here are a few you can participate in today:

(Note: We list trials for educational purposes only. Always work with your Parkinson’s specialist to determine if a trial is right for you.)

Parkinson’s Progression Markers Initiative (PPMI) Screen Survey – The Michael J. Fox Foundation

Home-based Exercise and Cognitive Behavior Therapy – University of Alabama in Huntsville

Parkinson’s and Service Dogs – University of Groningen, Netherlands

Neurology Study Interest Registry – University of Rochester

Park Test – University of Rochester

Project Euphonia – LSVT Global and Project Euphonia

BouNDless – Phase 3 trial to investigate the efficacy, safety, and tolerability of ND0612, a continuous subcutaneous levodopa/carbidopa delivery system in comparison to oral levodopa/carbidopa in people with Parkinson’s experiencing motor fluctuations

#2 – Become an Ambassador

Ambassadors are an important link between Foundations and local Parkinson’s communities. Our Ambassador program was founded in 2015 to support the change-makers and community leaders who help people with Parkinson’s live well today. Many other foundations and companies that provide medications and treatments for people with Parkinson’s also have Ambassador programs. Becoming a Parkinson’s ambassador is a great way to educate others about Parkinson’s and about the tools, technology, and treatments you’ve used to help you live well with it.

If you’d like to become a Davis Phinney Foundation Ambassador or nominate someone else, go here. (P.S. You can nominate yourself!)

#3 – Raise money for Parkinson’s

You’ve read the numbers. You know the statistics. And you know that for better or worse, money talks. If we have any chance of helping ALL people get the care they need to live well with Parkinson’s, we need to keep the dollars rolling in. One of the best ways to do that is to find something you love to do and ask your family members, friends, and co-workers to support you. You could ride your bike for good, host a wine or dance party, or join us by doing minutes or miles all month to raise money for Parkinson’s.

Every victory and every dollar counts!

Ready to be inspired?

Read about those who have raised money for Parkinson’s by doing what they love.

Sir Stephen Magee on Why (and How) He Fundraises for Parkinson’s
Moments of Victory® – Miller Sigmon Celebrates His Birthday with a Fundraiser for Parkinson’s
Moments of Victory® – Rhonda Foulds Completes 100th Marathon
Moments of Victory® – Ellen Nordberg Rides and Raises Money for Parkinson’s at the Tour De Victory
Moments of Victory® – Steve Hovey Rides and Fundraises for Parkinson’s
Moments of Victory® – Jim Duran Finds Creative Ways to Raise Money for Parkinson’s
Moments of Victory® – Suzanne Harrison Rides the Iron Horse Bicycle Classic
Moments of Victory® – Richard Beattie Emphasizes the Power of Telling Your Story
Moments of Victory® – Rick Baker Leads Friends for Phinney
Moments of Victory® – Jill Ater Taps into Her Community
Patti Burnett Rideas and Raises Money at the Copper Triangle
Tour De Victory Rides Through Boulder with Tom Palizzi at the Helm

Want More Practical Articles Like This?

Much more can be found in our Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Request your free copy of the Every Victory Counts manual by clicking the button below.

Request Your Manual Now

Thank you to our 2020 Peak Partners, Amneal and Kyowa Kirin, with special support from Adamas, for helping us make printing, distributing, and shipping the Every Victory Counts manual for free possible.

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