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How patient advocacy is redefining Parkinson’s research

How patient advocacy is redefining Parkinson’s research

FromYour Complex Brain


How patient advocacy is redefining Parkinson’s research

FromYour Complex Brain

ratings:
Length:
46 minutes
Released:
Jun 28, 2022
Format:
Podcast episode

Description

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 PDAvengers The Michael J. Fox Foundation for Parkinson’s Research Videos: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/krembilTo get in touch, email us at krembil@uhnresearch.ca or message us on social media:Instagram - @krembilresearchTwitter - @KBI_UHNFacebook - https://www.facebook.com/KrembilBrainInstituteThanks for listening!
Released:
Jun 28, 2022
Format:
Podcast episode

Titles in the series (38)

Explore the myths, mysteries, and medical breakthroughs of the most complex and powerful organ in your body – your brain. Weaving together expert interviews with heartfelt, inspiring snapshots of the patients and family members in the middle of it all, Heather Sherman dives into the latest science on Alzheimer’s, Parkinson’s, epilepsy, stroke, concussion, spinal cord injury, brain cancer, chronic pain and other brain diseases and disorders. Along the way she uncovers surprising insights, sheds light on the latest research, and shares heroic, real life stories from the people on the front lines. Brought to you by Krembil Brain Institute at UHN, one of the largest and most comprehensive neurological centres in North America. Learn more about our mission at: http://www.uhn.ca/krembil