Bridging Gaps: A Patient-Oriented Neuroscience Research Symposium
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Bringing together neuroscience researchers, people with lived experience, patients and caregivers to highlight brain health research in an accessible format.听
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, 91黑料网 faculty and representatives from partner organizations such as ,听听and the听.
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.
Agenda
| Time | Session |
|---|---|
| 10:15-11:00 a.m. | Registration and coffee |
| 11:00-11:05 a.m.听 |
Opening remarks Speaker: Alan Evans, Scientific Director of Healthy Brains, Healthy Lives |
| 11:05 a.m.-12:00 p.m. |
Keynote:听The value of patient partnerships in translational research on developmental disorders Speaker: Tatiana Ogourtsova, 91黑料网 Moderator: Alan Evans |
| 12:00-1:00 p.m. | Lunch |
| 1:00-2:00 p.m. | Poster presentations (18听posters on brain health-related topics) |
| 2:00-3:00听p.m. |
Panel: Navigating the health care system with rare diseases of the nervous system Panellists:
Moderators:
|
| 3:00-3:15听p.m. | Break |
| 3:15-3:45听p.m.听 |
Flash Talk: Together, we are stronger! Speakers:听
|
| 3:45-4:00听p.m.听 | Awards ceremony and closing remarks听 |
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 91黑料网. 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.听
Julie Coulombe | Panellist
A peer family caregiver for the Soci茅t茅 qu茅b茅coise de la schizophr茅nie et des psychoses apparent茅es 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 sant茅 et les services sociaux pour les populations rurales (Interdisciplinary Chair on Health and Social Services for Rural Populations) at the Universit茅 du Qu茅bec 脿 Rimouski (UQAR) and was awarded a grant from the Fonds de recherche du Qu茅bec'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 Universit茅 de Montr茅al'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 91黑料网鈥檚 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 91黑料网 Health Centre (MUHC) and directs 91黑料网鈥檚 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 Universit茅 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.听
Abbe Lai | Panellist
Abbe is a certified genetic counsellor with over eight years of experience coordinating a neurogenetics specialty clinic at Boston Children鈥檚 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 91黑料网.
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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 tumour 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.听Linda works directly with C-BIG, the open patient biobank at the Neuro within 91黑料网.听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听Chetkowski听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 three years, his听 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 91黑料网 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 Qu茅bec (Wilder Penfield), and the magazine听Science听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 . 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 91黑料网 for the Unit茅 de soutien au syst猫me de sant茅 apprenant (SSA) Qu茅bec. She has also served as a patient partner mentor with health students for the Bureau du Patient Partenaire (BPP) at Universit茅 de Montr茅al, and is involved in other patient partner development projects in Greater Montreal area. Sonia is also a professional musician and conducts choirs in the Mont茅r茅gie region.听
Accessibility and accommodations
Please note that the following accommodations will be provided at the event:
- Parking (for those with听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鈥檚 surveillance area (with an accompanying adult,听not a daycare service)
Advisory Committee
Susan Rich
Susan has been a patient advisor since 2017 after waiting 17 months for a complex spinal surgery. She is especially interested in access to care and wait times, integrated care, and amplifying patient and family voices. Susan has been involved in working groups, policy development and research projects at local, provincial and federal levels. Drawing from her own experiences as an 鈥渙rphan鈥� patient with atypical autonomic dysfunction, Susan hopes to encourage conference attendees to look beyond common diagnoses and explore additional areas of research where they can make a meaningful difference in people鈥檚 lives.
JoAnne Mosel
JoAnne Mosel, CPA, is a dedicated advocate in the rare disease space with over 30 years of experience. Her expertise in patient-oriented research and healthcare evidence ensures knowledge is accessible to patients and the public. JoAnne has worked with researchers across Canada, contributing to innovative projects, including one of the inaugural patient-driven research initiatives supported by the CIHR SPOR Evidence Alliance. Passionate about empowering patients, she continues to expand her skills through ongoing education and collaboration.
Monica Halsey
Monica Halsey is a lived experience educator, advocate and systems collaborator working at the intersection of healthcare, education and family engagement. She is the mother of two neurodivergent sons and has served for over a decade as a Family Leader and Family as Faculty at Holland Bloorview Kids Rehabilitation Hospital, Canada鈥檚 largest children鈥檚 rehabilitation hospital. Monica embeds the patient and family voice across hospital initiatives, including the recent redesign of the autism diagnostic process. She co-designed and co-facilitates a peer support group for caregivers awaiting autism assessments and co-teaches the Family as Faculty Training Course, which prepares patient and family partners to co-deliver healthcare education. Monica is also a North American ambassador for the International Society for Patient Engagement Professionals (ISPEP) and is completing a Doctor of Education with a focus on neurodiversity, inclusive education and system redesign.
Heather Dyck
Heather Dyck is a patient partner from rural northern Saskatchewan, where she lives in a multigenerational family home with enough cats to call herself an official old cat lady. She is actively involved in patient-oriented research and health system improvement while balancing her own health issues of MS, psoriatic arthritis, spondyloarthropathy in most of her spine as well as other autoimmune diagnoses. She is a storyteller and artist and appreciates how communicating using art and stories is both impactful for health system leaders and calming for patients and families facing challenging situations.