“We believe ending Parkinson’s is an achievable and worthy mission.” PD Avengers
Inspired by the book Ending Parkinson’s Disease: A Prescription for Action 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 the authors* in the fight to end Parkinson’s disease.
*Join Parkinson Canada for a webinar featuring the authors on October 7, 2020 at 12:00PM (noon) ET – to register for this free event: https://corp.discoverycampus.com/pc2020_1007_1200est-book/
As the group explored the enormity of the task, they began to joke that they were a bit like cartoon superheroes trying to rid the world of evil. Someone jokingly called them “The Avengers.” Someone else said, “The PD Avengers.”
The name stuck.
“Our Vision is to end Parkinson’s,” says Tim Hague. To accomplish that vision our goal is to create an alliance of 1 million PD Avengers from around the world, standing together to make our voices heard, demanding that more be done for Parkinson’s.
It comes as no surprise that the book “Ending Parkinson’s Disease: A Prescription for Action” mildly offers hope on a cure in sight. What is fantastic is its wealth of knowledge on environmental factors; the need for research and what is being investigated; care options and lack thereof; and lastly, the call for a unified community advocating for Parkinson’s disease initiatives.
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 has more than forty possible symptoms.
There is no cure.
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 accomplished so very little for Parkinson’s disease.
Meet the Founders
There were twelve at that first gathering of leaders, including Tim Hague Sr. and Dr. Soania Mathur.
Tim Hague Sr was diagnosed with Parkinson’s in 2011 at age 46. Tim is a retired nurse of 20+ years who devotes his time to professional speaking, writing and as founder of the Parkinson’s wellness centre, U-Turn Parkinson’s. He is the author of the bestselling book Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined.
Tim has spoken for TEDx and is sought after across North America for his motivational and inspiring topics, Live Your Best and The Power of Perseverance. After having been diagnosed with Young Onset Parkinson’s Disease, Tim and his son went on to win the first season of the reality television series The Amazing Race Canada. He is an outspoken and effective advocate on behalf of people living with Parkinson’s around the world. To learn more about Tim’s work visit www.TimSr.ca and www.UTurnParkinsons.org
“Our Vision is to end Parkinson’s,” says Tim. “To accomplish that vision, our goal is to create an alliance of 1 million PD Avengers from around the world, standing together to make our voices heard, demanding that more be done for Parkinson’s.”
Dr. Soania Mathur is a family physician living outside of Toronto, Ontario, Canada who resigned her clinical practice twelve years following her diagnosis of Young Onset Parkinson’s Disease at age 28. Now she is a dedicated speaker, writer, educator and Parkinson’s advocate. She speaks passionately about the challenges of adjusting physically and emotionally to a diagnosis of Parkinson’s disease and the coping strategies available to patients.
Dr. Mathur is an active speaker in Canada and internationally at patient-directed conferences and has authored several published papers and online pieces that focus on patient education and empowerment. Her advocacy work also focuses on clinical trials and the importance of the patient voice and involvement in research. She joined the Patient Council of The Michael J. Fox Foundation for Parkinson’s Research in 2010 and has served as Co-Chair for the last four years. She is also a new member of the Executive Science Advisory Board at MJFF. Supportive of other organizations she also devotes time as a member of Board of Directors at The Davis Phinney Foundation, is part of the Editorial Board for the Journal of Parkinson’s Disease, serves on The Brian Grant Foundation Advisory Board and the Medical Advisory Board for Parkinson Canada and also works with Parkinson’s Movement UK and Cure Parkinson’s Trust.
Dr. Mathur is the founder of UnshakeableMD (www.unshakeablemd.com) which was initially created to raise funds directed towards research and awareness of Parkinson’s disease and now serves as a platform to educate and inspire those living with this disease to take charge of their lives and to live well with Parkinson’s.
Dr. Mathur has a special interest in helping educate the youngest affected by the stress of this chronic disease. To help facilitate dialogue between children and their loved ones, she has authored two books: My Grandpa’s Shaky Hands and Shaky Hands—A Kid’s Guide to Parkinson’s Disease. All proceeds from the sales of these books are donated to support Parkinson’s research and other efforts that serve the PD community.
In her words, “We may not have a choice in our diagnosis but how we face the challenges this disease brings, is ours to determine.”
Soania lives with her three daughters and her husband, who is also a physician.
The authors and the leaders at PD Avengers believe that the community needs to continue to be involved and play a role in helping improve care, prevent the disease and speed a cure. Their partnership on the book is fuelled by their passion to act more aggressively to end Parkinson’s disease, and to address the need for new approaches to slow down or arrest the relentless progression of Parkinson’s. Reading their novel and attending the webinar discussion on October 7, 2020, provides valuable information on causes and correlations leading to Parkinson’s disease, and the power communities can have over the trajectory of Parkinson’s disease.
Date Wednesday, October 7
Time 12:00PM (noon) ET
Channel Discovery Campus
Cost FREE thanks to the generosity of donors
Visit the PD Avengers website and get involved—spread the word, listen to the webinars, complete surveys and get involved in research https://www.pdavengers.com/ending-pd
Email your questions and suggestions to info@endingPD.org.
“PD Avengers is not just for those with PD. We need everyone’s voice.” —Larry Gifford, PD Avenger, and host of When Life Gives You Parkinson’s
Questions? Contact firstname.lastname@example.org or all 800 565 3000