Bridging Gaps: Patient-Oriented Neuroscience Research Symposium
Agenda Speakers Accessibility Bringing together neuroscience researchers, people with lived experience, patients and caregivers to highlight brain health research in an accessible format. Healthy Brains, Healthy Lives (HBHL)'s Trainee Committee is pleased to present Bridging Gaps: Patient-Oriented Neuroscience Research Symposium 2025. This Symposium is the HBHL EDI Trainee Committee's flagship event, designed to centre the voices and experiences of people living with neurological disorders. The Symposium will feature a keynote, a poster session and a panel discussion, all surrounding the themes of health care, rare diseases of the nervous system and patient partnerships. Attendees will include trainees, patients, caregivers, McGill faculty and representatives from partner organizations such as CHILD-Bright, Regroupement québécois des maladies orphelines (RQMO) and the Société québécoise de la schizophrénie. This event aims to foster patient-researcher partnerships by making science more accessible to people with lived experience, and to increase awareness and inclusivity for rare diseases of the nervous system. REGISTER NOW! Agenda Time Session 10:15-11:00 a.m. Registration and coffee 11:00-11:05 a.m. Opening remarks Speaker: Alan Evans, Scientific Director of Healthy Brains, Healthy Lives 11:05 a.m.-12:00 p.m. Keynote: The value of patient partnerships in translational research on developmental disorders Speaker: Tatiana Ogourtsova, McGill University Moderator: Alan Evans 12:00-1:00 p.m. Lunch 1:00-2:00 p.m. Poster presentations (18 posters on brain health-related topics) 2:00-3:00 p.m. Panel: Navigating the health care system with rare diseases of the nervous system Panellists: Julie Coulombe, Société québécoise de la schizophrénie Maria Masnata, Neuromuscular Disease Network for Canada Abbe Lai, McGill University Dr. Jason Karamchandani, The Neuro (Montreal Neurological Institute-Hospital) Pamela Fortier, Patient Partner Moderators: Dr. Roberta La Piana, The Neuro Sonia Lussier, Unité de soutien au système de santé apprenant (SSA) Québec 3:00-3:15 p.m. Break 3:15-3:45 p.m. Flash Talk: Together, we are stronger! Speakers: Linda Lafontaine, Canadian ambassador for the Spastic Paraplegia Foundation Gregory Chetkowski, Patient Partner 3:30-3:45 p.m. Awards ceremony and closing remarks Speakers Tatiana Ogourtsova | Keynote speaker Tatiana Ogourtsova is an occupational therapist and an Assistant Professor at the School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences at McGill. Her expertise spans the areas of childhood disability, pediatric neurorehabiltiation, the use of novel approaches, including technology-driven solutions, telehealth and coaching. Her work focuses on family-centred care, mental health, knowledge mobilization, development and implementation of evidenced-based clinical practices and use of patient-oriented research. She leads the RESI-ALLIANT KID laboratory with an interdisciplinary team of experts, clinicians, parents and youth partners. Julie Coulombe | Panellist A peer family caregiver for the Société québécoise de la schizophrénie et des psychoses apparentées since 2020, Julie has experiential knowledge as a caregiver and companion for many families, allowing her to experience the health care system network in the greater Montreal area, in child psychiatric and psychiatric hospitals. She collaborates as a citizen researcher with the Chaire interdisciplinaire sur la santé et les services sociaux pour les populations rurales (Interdisciplinary Chair on Health and Social Services for Rural Populations) at the Université du Québec à Rimouski (UQAR) and was awarded a grant from the Fonds de recherche du Québec's ENGAGE Program in 2021. She is involved in various areas and projects related to peer family support, and her field experience gives her a strong understanding of the context surrounding issues in the field of health and social services. She is a graduate of the Université de Montréal's undergraduate microprogram in mental health and has been working for the National Bank of Canada for 20 years. Jason Karamchandani | Panellist Dr. Jason Karamchandani is a neuropathologist and Associate Professor at McGill University’s Department of Pathology, based at The Neuro. His work focuses on understanding brain and nerve diseases by studying tissue samples and using data to identify markers that can help diagnose and predict outcomes for brain tumours and neuromuscular disorders. He also leads the immunohistochemistry and special stains division at the McGill University Health Centre (MUHC) and directs McGill’s Anatomic Pathology residency program. Dr. Karamchandani studied biochemistry at Harvard University and earned his medical degree as valedictorian from Stanford University. He has published over 40 scientific papers and several book chapters on brain and spinal cord tumours. Maria Masnata | Panellist Maria is a Clinical trial and community of practice manager for Muscular Dystrophy Canada and The Neuromuscular Disease Network for Canada. She has over 10 years of experience in clinical and preclinical research in neuroscience, and received her PhD in Neurobiology from Université Laval in 2021. She developed extensive experience in clinical research and project management during her previous role as assistant manager of the investigator-initiated trial team of the Clinical Research Unit at the Neuro. With a proven track record of managing and coordinating projects leading to Health Canada-approved trials, peer-reviewed publications and international presentations, Maria is committed to advancing health care and advocating for scientific innovation. Abbe Lai | Panellist Abbe is a certified genetic counsellor with over eight years of experience coordinating a neurogenetics specialty clinic at Boston Children’s Hospital. She has supported hundreds of families by ensuring the ethical and equitable communication of diagnostic results and by helping identify appropriate resources to meet their needs. Abbe is currently enrolled in a Neuroscience PhD program under Dr. Roberta La Piana at McGill University. Pamela Fortier | Panellist Trained as a nurse, Pamela Fortier was on the path to a career in healthcare when a diagnosis of a brain tumour and subsequent surgeries changed the course of her life. After years of medical uncertainty, she was finally diagnosed with PTEN hamartoma tumor syndrome (Cowden Syndrome), a rare genetic condition that continues to shape her journey. Despite ongoing health challenges, Pamela has found strength and purpose through volunteering, physical activity and creative expression. Her involvement in zoo therapy, dog walking and the arts, including poetry and slam, allows her to stay grounded, give back to others and continually redefine her sense of self. Linda Lafontaine | Flash Talk Speaker Linda Lafontaine is a Patient Advocate for Hereditary Spastic Paraplegia (HSP). She is an HSP patient and an active member of the HSP, Primary lateral sclerosis (PLS) and Ataxia communities. She has worked with multiple foundations, taken the stage as a speaker at events, and rallied the HSP, PLS and Ataxia communities to participate in research. Linda works directly with C-BIG, the open patient biobank at the Neuro within McGill University. Linda has established a patient-led cohort of HSP patients, while adding to the existing PLS cohort and introducing many Ataxia patients to C-BIG and the Neuro. Together, Linda, C-BIG and the Neuro promote collaboration through Open Science and give patients a way forward. Gregory Chetkowski | Flash Talk Speaker Greg Chetkowski is a patient suffering from Spinal Cerebellar Ataxia (SCA) 27B, a rare hereditary degenerative disease. Greg is a retired airline mechanic, having worked at Air Canada for 32 years. An avid camper, hiker, canoe enthusiast, golfer and expert skier, Greg was able to keep active despite a lifetime of vertigo and balance issues. In the last 3 years his condition has rapidly degenerated with his mobility being severely impacted to the point of requiring the use of a walker and/or a wheelchair. After just being recently diagnosed with SCA27B 4 months ago, Greg is now benefitting from taking 4-AP (Fampyra-Brand or Fampridine-Generic). Ongoing clinical trials of the impact of 4-AP on patients suffering from SCA 27B have shown remarkable positive results. It is due to this ongoing research that Greg is seeing a significant reduction in his symptoms and a great improvement in his quality of life. Moderators Alan Evans Alan Evans is a James McGill Professor of Neurology and Neurosurgery, Psychiatry and Biomedical Engineering, a researcher at the McConnell Brain Imaging Centre, Co-Director of the Ludmer Centre for Neuroinformatics and Mental Health, Principal Investigator of CBRAIN, the Victor Dahdaleh Chair in Neurosciences and the Scientific Director of HBHL. He was inducted as a Fellow of the Royal Society of Canada in 2015 and as an Officer of the Order of Canada in 2025. In 2016, he was awarded the Prix du Québec (Wilder Penfield), and the magazine Science has ranked him #6 in a list of the most influential brain scientists of the modern era, having pioneered the technique of multi-modal 3D brain imaging. Roberta La Piana Dr. Roberta La Piana is Assistant Professor in the Department of Neurology and Neurosurgery at the Neuro (Montreal Neurological Institute-Hospital). Her research mainly focuses on rare genetic white matter disorders and their overlap with more common disorders like multiple sclerosis. In 2013, Dr. La Piana launched the White Matter Rounds. These interdisciplinary monthly meetings, aimed to discuss atypical white matter disease presentations, have evolved into an international network including researchers and clinicians from more than 15 centres around the world. Sonia Lussier A communications professional, Sonia Lussier has led numerous projects in the fields of health and environment, notably with cancer patients. As a patient partner, Ms. Lussier works with Dr. Tracie Barnett as a co-director of the patient partner unit at McGill for the Unité de soutien au système de santé apprenant (SSA) Québec. She has also served as a patient partner mentor with health students for the Bureau du Patient Partenaire (BPP) at Université de Montréal, and is involved in other patient partner development projects in Greater Montreal area. Sonia is also a professional musician and conducts choirs in the Montérégie region. Accessibility and accommodations Please note that the following accommodations will be provided at the event: Parking (for those with mobility needs) Wheel-chair friendly venue Close captioning during presentations Live translation into French Glossary (to define common medical jargon, bilingual) Hybrid sessions with option to submit questions beforehand Children’s surveillance area (with an accompanying adult, not a daycare service)
Bridging Gaps: Patient-Oriented Neuroscience Research Symposium | The Neuro - McGill University www.mcgill.ca/neuro/channe...
