Dr. Soania Mathur from Unshakable MD & PD Avengers

An interview with Dr. Soania Mathur from Unshakable MD & PD Avengers on October 11, 2023 by George Ackerman, Ph.D, J.D.





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. Her platform, UnshakeableMD ( serves as a resource for patient education as well as an outlet for her personal experiences with this disease.


Dr. Mathur is an active speaker in Canada and internationally, serves on committees and boards for several organizations and has authored several published papers and online pieces that focus on patient education, empowerment, and the vital importance of involving patients in all areas of clinical research.

She served as Co-Chair for the Patient Council of The Michael J. Fox foundation for Parkinson’s Research and is also a member of the Executive Science Advisory Board at MJFF. 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 and serves on The Brian Grant Foundation Advisory Board. Dr. Mathur has valued her involvement with WPC as both a speaker and committee member and was awarded the World Parkinson Coalition Award for Distinguished Contribution to the Parkinson’s Community at the WPC in 2019. She was also privileged to be recognized in 2020 by receiving the Alan Bonander Humanitarian Award for her work in the PD community. Locally she is a member of the Board of Directors for the Lakeridge Health Foundation and also sits on the Patient Advisory Board for the Toronto Western Hospital Movement Disorder Clinic where she chairs the research committee.

Recently she co-founded PD Avengers, a self-funded, global alliance of Parkinson’s advocates dedicated to unifying the global PD community to add urgency to the areas of wellness, research, and advocacy, to end Parkinson’s (


Please tell me a little about your background.


I’m a family physician and also patient living with Young Onset Parkinson’s disease for almost 25 years, diagnosed at the age of 28. I live outside of Toronto, Ontario, Canada with my husband (a Urologist) and my three beautiful daughters. I was just finishing my medical residency and expecting my first child when I received the news that what I thought was nothing more than an intermittent tremor, was in fact an incurable, progressive neurodegenerative disease.




Can you tell me more about your advocacy?


I work widely in the field of advocacy – research, writing, speaking, education. I serve on a number of foundation boards and committees including MJFF, Davis Phinney Foundation, Brian Grant Foundation. I’ve authored two children’s books on PD, “My Grandpa’s Shaky Hands” and “Shaky Hands – A Kid’s Guide to Parkinson’s” to address the youngest affected by a diagnosis in the family. I have also written several published journal articles on a variety of patient-centered PD topics, including research participation, the patient voice in clinical research, patient-centered care, empowerment and stigma. A couple of years ago, along with two other advocates, I co-founded a global patient advocacy group – The  Global Alliance to End PD (aka The PD Avengers). We now have close to 7000 members across 95 countries and 135 partner organizations.


What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?


My passion is to help individuals with PD to not just live but live well and thrive with their diagnosis, to become active participants in their management. I truly believe that education and empowerment are an essential part of maximizing your care and quality of life.


Of particular interest to me at the moment, is global equity in medication availability and care because we know that a large part of our global PD community does not have access to something as simple as dopamine replacement. And the quality of life is so compromised because of the stigma associated with the symptoms of the disease, lack of awareness and paucity of resources. Currently I am also doing a lot of work around women and PD, a much-neglected topic. There needs to be more research and treatment guidelines for women specifically at all stages of life.


What type of goals do individuals with Parkinson’s have when working with you?


I hope to inspire others living with the challenges of this disease to first accept their diagnosis, educate themselves, take control over those variables such as self-care, build their healthcare team all in an effort to maximize their quality of life. Because until there is a cure, it’s all about quality of life.


What effect can your advocacy have on an individual with Parkinson’s?


Advocacy in general, can instill a feeling of empowerment, taking control over what can be, an uncontrollable situation. Giving back to your community and making a difference for others, helps you cope with your own illness.



What would you like to see as a future goal for your advocacy?


My advocacy work will continue until PD is relegated to the history books.


What events do you participate in?


Numerous, both nationally and internationally, working with people living with the disease, advocacy organizations, medical organizations, pharma and researchers.


How does your advocacy also assist the caregivers?


I have a tremendous respect for care partners, and the education, insight and support is not just for the patient but for them as well.


How can someone get in touch?  What is your website?


I can be reached via email at

My website is and the PD Avengers website is


How can others also become advocates for awareness?


Simply – get involved. The first step is to get involved with something that interests you and then build your community and connections. There is lots to be done. Also consider joining an advocacy group like the PD Avengers. 



In your opinion what is the key to effective advocacy? 


Find your passion, the cause you are particularly interested in, and find an organization, foundation, support group, research group that fits your goals and skillset.


If you had one final statement or quote you could leave for the Parkinson’s community, what would it be? 


We may not have control over our diagnosis, but how we face the challenges this disease brings, is ours to determine.