Stop Speaking for Us. Start Listening to Us.
In 2023, shortly after being diagnosed with Young Onset Parkinson’s I bought a book, called “Ending Parkinson’s”. I naively thought that somewhere nestled in between the rough pages of a book would be the cure to the myriad of strange things that had been happening to my body, that now had a name. What I got instead was a mission.
To become an activist.
The book mentioned the HIV/AIDS movement, how a relatively small group of citizens could truly change the course of a terrible disease. I remember thinking “who will watch my kids while I go and chain myself to the doors of the FDA?”.
The reality was no one. I’m sure the FDA has more than one door anyway. The other two things the book mentioned was the PD Avengers, a global group of patients and others on a mission to end Parkinson’s, and an organization of groups on a similar mission, called UPAC. UPAC stands for the Unified Parkinson’s Advocacy Council.
The list of group members is an illustrious who’s who of the Parkinson’s world: Michael J Fox Foundation, Parkinson’s Foundation, APDA, Davis Phinney and the aforementioned PD Avengers. Fast forward three years and I am now a PD Avenger myself, and because of this I am also able to serve on UPAC. The co-authors of the book, Ray Dorsey, MD and Michael Okun, MD are our trusted medical advisors. They followed up “Ending Parkinsons” with “The Parkinson’s Plan”, another call to arms against the toxic chemicals that are also causing Parkinson’s.
I understand committees like UPAC very well. As a former Hospital Administrator who specialized in Quality it was always my responsibility to run every Hospital’s largest committee, QAPI. This is required by Federal Law for any hospital to bill Medicare, and in every state to obtain a hospital license. I loved this part of my job. Everyone else hated it. So I tried to make them as quick and painless as possible. The point of committees is generally defined somewhere, an agenda made, people invited and data presented. Who sits around the table matters. I always thought of it as a party, you need a good mix of people. I sit on two UPAC subcommittees, Research Funding and Access to Care. The latter I also co-chair.
Part of the reason I joined the PD Avengers was the alignment of these two priorities, not just in the US, but on a global scale. The PD Avengers board of directors consists of three Canadians and two American’s as it’s board now. We meet weekly. Over the Summer we embarked on a series of two-hours long strategic planning sessions. A necessary but laborious process that any growing org needs if it wants to make sure it is serving the community and it’s mission. As we emerge from the summer break you can expect regular updates, and requests, so that we can work together to put forth the voices of the community to those working hard on our behalf.
This will be the first: If you or anyone you know has been impacted by disruption of scientific research studies or clinical trials in the US please let us know. This request is to both research participants and the researchers themselves.
If you or anyone you know, within the research community has experienced delays in funding, rejection of grant applications which normally would have been approved, etc. please reach out to us.
This information will be confidential. Your stories are important. People with Parkinson’s voices should be heard, and we are here to listen. Access and research cannot exist without the professionals that dedicate their lives to these important careers. Their voices matter too.
The PD Avengers will be sending out periodic surveys, to collect real time community feedback on a variety of issues. Onboarding takes five minutes and allows us to collect basic bio information one-time only. You can access the PD Avengers Community Pulse here. Your information will be protected and our purpose transparent.
It is a great privilege to serve this beautiful community I never wanted to join. This volunteer work and all the amazing people I have met along the way have truly been the silver lining to this unexpected journey I now find myself on.
I thank you.
Esther
shakinginmyboots1@gmail.com