I spent an absorbing two hours this week “Zooming” in-and-out on the internet with a dozen international activist/leaders in the struggle against Parkinson’s disease.
Among the countries represented were Canada, Great Britain, Ireland and the USA. Participants were eager to assault inequality in access to quality Parkinson’s care worldwide.
I will know more about them and their stories as our twice-monthly meetings gain momentum. Our leader is the able Richelle Flanagan of Ireland.
Most members seem to be PD sufferers—a mixture of short and long duration. There were old guys like me and working folk in their 40s.
It is incongruous that “journalist me” is telling a sketchy story with limited details. But after all, it’s Parkinson’s, a condition that is wispy–the classic Snowflake Disease.
Our “equity” committee is part of PD Avengers. This new, global group comprises Parkinson’s advocates who were inspired to take action after reading the remarkable new book “Ending Parkinson’s” by Drs. Bas Bloem, Michael Okun, Ray Dorsey and Todd Sherer.
The book’s Prescription for Action is this: “We must form a PACT to end Parkinson’s. This PACT will Prevent the disease, Advocate for policies and resources, Care for all affected and Treat the condition with new and more effective therapies.”
I wrote this in an April newspaper review of the book: It is a compelling read and a “stunning and important work deserving urgent attention from Parkinson’s fighters, their families and health-care policymakers.”
The charge to our equity committee is:
“We need all people of the world with Parkinson’s to have equitable access to proper medications, treatments, information and support in order to meaningfully add their voices to our 50 million PD Avengers.”’
I will report regularly on the committee’s work in coming months.
For more on PD Avengers, see https://www.pdavengers.com.