PD Avengers Origin Story:
How a global alliance of advocates united with a common goal of ending Parkinson’s
More than 10 million people in the world have Parkinson’s. It is the fastest growing neurological disease in the world. It is degenerative. It is guaranteed to get worse. It has more than forty possible symptoms of which Levadopa, the ‘gold standard’ of treatment, is over 50-years-old, it is not one hundred percent effective and is not available to everyone who needs it.
Most people think it is just a shaky hand. In fact, it is a life sentence of being trapped in a body that increasingly refuses to obey commands. A prison of slowness and rigidity where individuals are left abandoned with clouded minds and muted voices; locked in mental and physical pain, slowly and silently dying.
Parkinson’s was discovered over 200 years ago. Since then humanity has put men on the moon, eradicated polio, changed HIV from a death sentence to a chronic illness, has mapped the human genome and discovered thousands of galaxies among the stars; and yet, has provided precious little beyond that one fifty-year-old drug for Parkinson’s.
We are tired of it.
Inspired by the book, “Ending Parkinson’s” by Drs. Ray Dorsey, Michael Okun, Bas Bloem and Todd Sherer, a group of leaders found themselves drawn together by the vision of its PACT (Prevent, Advocate, Care, Treat). It was decided that these leaders, most of whom live with Parkinson’s, would join forces with them.
There were twelve at our first gathering. As we explored the enormity of the task we began to joke that we were a bit like cartoon super heroes trying to rid the world of evil. Someone jokingly called us “The Avengers”. Someone else said, “The PD Avengers.” The name stuck.
The PD Avengers have three pillars of focus: wellness, advocacy, and research.
We believe every person living with PD should have equitable access to basic therapies & resources.
We believe we have been too silent for too long. That we must become a loud, uncomfortable, ever-present voice demanding change in how the disease is seen and treated.
We believe Parkinson’s can be eliminated through prevention and research. We demand that greater resources and urgency be placed on ending the disease and eliminating man-made triggers that cause it.
We add urgency to research, wellness, and advocacy by uniting people and organizations to the cause of ending Parkinson’s.
We are a global alliance of people with Parkinson’s, our partners and friends, standing together demanding change in how the disease is seen and treated.
If you have more questions, you may find the answer here.