The groups that support people with Parkinson’s
Cases of Parkinson’s disease are increasing worldwide, but so is the number of organizations supporting the Parkinson’s community.
I don’t mean the local (and Zoom-based) support groups where members share experiences and encouragement. Though those are awesome, too.
I’m referring to groups that aid research, raise funds, rally PD patients, offer direction to families and care partners, and sponsor events big and small.
They are 501(c)’s and the LLC’s that are working on behalf of people like me who live with a flickering hope that the coming year will be as healthy for them as the previous one.
And these groups do swell things.
I want to highlight two that have been on my mind lately:
The World Parkinson Coalition
The coalition held its 6th Congress in July, bringing together 2,600 people including researchers, medical professionals, and people with PD and their caregivers for three days of seminars and activities.
Founded in 2004, the World Parkinson Coalition is open to people from all countries. Congresses have been held about every three years, so far in Washington, D.C.; Montreal; Portland; Kyoto, Japan; and, this year, Barcelona, Spain (shown at left).
I cruised the internet for responses and reactions from those who attended the Congress, and I found some common themes:
- It was a unique experience to be up close and personal with really smart researchers
- I felt supported. It changed my thinking about this disease
- There was a sense of optimism over the whole conference
- I learned about being an advocate
- I saw that researchers from different countries are working together more than ever
As one participant said:
“You’ll learn a whole lot more, even things you didn’t know you needed to know.”
The next Congress will be in two or three years; it’ll be in the U.S., but the city is still a secret.
I’m planning to attend, wherever and whenever it lands.
Especially if there is some good hiking in the area!
PD Avengers
There’s another group out there with big plans. Canada-based Larry Gifford is a radio announcer who was diagnosed with Parkinson’s in his mid-40s a few years ago.
What does a guy with a radio voice do with that? He starts a podcast!
That’s how I found him, and I welcomed him into my podcast app and my life, along with the organization he formed, PD Avengers.
Its vision? To end Parkinson’s.
A rather lofty goal. Certainly, this is the stuff of superheroes.
One way that PD Avengers will do that, according to its website, is through becoming “a global alliance of people with Parkinson’s, our partners and friends, standing together to demand change in how the disease is seen and treated.”
The groundbreaking book “Ending Parkinson’s Disease” provides a basis for much of the organization’s goals and ideas. The 2020 book (authors Dorsey, Sherer, Oken, and Bloem) has caused a stir in the fields of both medical research and politics.
(There’s a lot to this book and I plan to review it in a future post.)
Anyone can join PD Avengers. I did, and I attended my first meeting in early August.
At the meeting on Zoom, we heard from members who attended the WPC event in Barcelona. Then Larry and his wife/care partner/podcast co-host, Rebecca, led a discussion about Moyer’s eight stages of a social movement. A whole movement! That’s how big their plans are.
Check out PD Avengers.
Then, perhaps you can put on your cape and start convincing the world that this disease will not go unavenged!
Photo credits: Hannah Busing (hands), Ansar Naib (Barcelona), Amr Taha (studio), Lucas Vasques (lab worker). Permission given from author to use book cover.
