How patient advocacy is redefining Parkinson’s research

Your Complex Brain

More than 100,000 Canadians are living with Parkinson's, a progressive brain disease that can impact mobility, cognitive function and speech. In this episode, Heather explores what it means to not just live with Parkinson’s, but to ‘live well,’ with meaning and purpose.
She meets with two patients currently living with Parkinson’s, who are on a mission to help others on the same journey, and a neurologist and scientist, who sees Parkinson’s patients and researches new approaches to treatment.
The guests are all members of the Patient Advisory Board (PAB) at Krembil Brain Institute's world-renowned Movement Disorders Clinic. The PAB’s mandate is to help improve the quality of research, communication, and the overall patient experience within the clinic, and to redefine how healthcare professionals and patients communicate with each other, in the hopes that this novel approach to patient partnership could help move the Parkinson's field forward and improve patient outcomes.
Featuring:
Hugh Johnston is a retired professional accountant who spent many years as a strategic advisor to several of Canada’s top foodservice companies, helping to streamline operations and boost efficiency. Hugh’s business expertise came in very handy as the founding Chair of the Patient Advisory Board at Krembil Brain Institute’s Movement Disorders Clinic.
Dr. Soania Mathur is Chair of the Research Committee of the PAB, as well as Co-Chair of the Patient Council and a member of the Executive Science Advisory Board of the Michael J. Fox Foundation for Parkinson's Research. She is also one of the founders of PD Avengers, a global alliance of people with Parkinson's who are advocating for change, and the Founder of UnshakeableMD, a virtual platform helping to educate and engage those with Parkinson's to live full and productive lives.
Dr. Alfonso Fasano is a neurologist and a Clinician Investigator at Krembil Brain Institute (KBI), working primarily with patients living with Parkinson’s. He also holds the Chair in Neuromodulation and is co-Director of the Surgical Program for Movement Disorders at KBI, as well as Medical Advisor to the PAB.
Additional Resources:
Krembil Brain Institute Movement Disorders Clinic
Movement Disorders Clinic Speaker Series (featuring Hugh & Soania)
Parkinson Canada
UnshakeableMD
PDAv

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.
The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.
Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil
To get in touch, email us at [email protected] or message us on social media:
Instagram - @krembilresearch
Twitter - @KBI_UHN
Facebook - https://www.facebook.com/KrembilBrainInstitute
Thanks for listening!