Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

PD patients lose a strong advocate

The Parkinson’s disease community lost one of its most influential early patient advocates with the passing of Perry Cohen, PhD on May 9. Diagnosed with Parkinson’s disease (PD) in 1996, he dedicated his remaining years to advocating for the interests of people with Parkinson’s (PWP) in the development of new therapies.   

As the founder and director of the grassroots Parkinson’s Pipeline Project, Perry worked tirelessly to promote his vision of patient-centered healthcare, with the goal of improving individual health outcomes, and making patients partners, rather than passive subjects, in clinical research. His motto was, “The missing ingredient in the development of new therapies is the voice of the patient.” 

Perry’s achievements are the stuff memories are made of. No opponent was too big to scare him off, not even the world’s largest biotechnology companies. With Perry at its helm, the Pipeline Project created a Bill of Rights and Responsibilities for Research Participants, promoting greater patient participation and retention in clinical trials, and faster approval of new treatments. The launching of an interactive treatment database gave all stakeholders on-line access to current information about therapies in the pipeline and clinical trials. 

Although I hadn’t had occasion to talk to Perry in recent years, he came to mind whenever there was news about a potential new PD treatment or cure coming down the tracks.

I am proud to have been one of the early Pipeliners, helping secure the interests of Parkinson’s patients. The friendships I made and lessons I learned along the way have stayed with me. Many of us went on to do other things, but never forgot our roots.

In memory of all that Perry stood for, please join me in continuing to work towards finding a cure for PD. 

I wanna’ do something that matters
Say something different
Something that sets the whole world on its ear
I wanna’ do something better with the time I was given
I wanna’ try to touch a few hearts in this life
Leave nothing less than something that says “I was here”

Kristin Chenoweth – I Was Here



One comment on “PD patients lose a strong advocate

  1. Jenny Beutin
    May 21, 2021

    You already have my friend! You are amazing!❤️❤️


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This entry was posted on May 21, 2021 by in Advocacy, Parkinson's Awareness, Partners in Parkinson's, PD Heroes.

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