BEGIN:VCALENDAR VERSION:2.0 PRODID:-//132.216.98.100//NONSGML kigkonsult.se iCalcreator 2.20.4// BEGIN:VEVENT UID:20251118T201403EST-7563VoAw0C@132.216.98.100 DTSTAMP:20251119T011403Z DESCRIPTION:\n\n\n Agenda\n\n\n\n Speakers\n\n\n\n Accessibility\n\n\n \n\nBri nging together neuroscience researchers\, people with lived experience\, p atients and caregivers to highlight brain health research in an accessible format. \n\nHealthy Brains\, Healthy Lives (HBHL)'s Trainee Committee is pleased to present Bridging Gaps: Patient-Oriented Neuroscience Research S ymposium 2025. This Symposium is the HBHL EDI Trainee Committee's flagship event\, designed to centre the voices and experiences of people living wi th neurological disorders.\n\nThe Symposium will feature a keynote\, a pos ter session and a panel discussion\, all surrounding the themes of health care\, rare diseases of the nervous system and patient partnerships.\n\nAt tendees will include trainees\, patients\, caregivers\, ɬÀï·¬ faculty and representatives from partner organizations such as CHILD-Bright\, Regroup ement québécois des maladies orphelines (RQMO) and the Société québécoise de la schizophrénie.\n\nThis event aims to foster patient-researcher partn erships by making science more accessible to people with lived experience\ , and to increase awareness and inclusivity for rare diseases of the nervo us system.\n\nREGISTER NOW!\n\n\n \n Agenda\n\n \n \n \n Time\n Session\n \n \n \n \n 10:15-11:00 a.m.\n Registration and coffee\n \n \n 11:00-11:05 a.m. \n \n Openin g remarks\n\n Speaker: Alan Evans\, Scientific Director of Healthy Brains\, Healthy Lives\n \n \n \n 11:05 a.m.-12:00 p.m.\n \n Keynote: The value of patie nt partnerships in translational research on developmental disorders\n\n Sp eaker: Tatiana Ogourtsova\, ɬÀï·¬\n\n Moderator: Alan Evans\n \n \n \n 12:00-1:00 p.m.\n Lunch\n \n \n 1:00-2:00 p.m.\n Poster presentations (18 p osters on brain health-related topics)\n \n \n 2:00-3:00 p.m.\n \n Panel: Navig ating the health care system with rare diseases of the nervous system\n\n P anellists:\n\n \n Julie Coulombe\, Société québécoise de la schizophrénie \n Maria Masnata\, Neuromuscular Disease Network for Canada\n Abbe Lai\, McGil l University\n Dr. Jason Karamchandani\, The Neuro (Montreal Neurological I nstitute-Hospital)\n Pamela Fortier\, Patient Partner\n \n\n Moderators:\n\n \n Dr. Roberta La Piana\, The Neuro\n Sonia Lussier\, Unité de soutien au sy stème de santé apprenant (SSA) Québec \n \n \n \n \n 3:00-3:15 p.m.\n Break\n \n \n 3:15-3:45 p.m. \n \n Flash Talk: Together\, we are stronger!\n\n Speakers:  \n\n \n Linda Lafontaine\, Canadian ambassador for the Spastic Paraplegia Fo undation\n Gregory Chetkowski\, Patient Partner\n \n \n \n \n 3:30-3:45 p.m. \n A wards ceremony and closing remarks \n \n \n \n\n Speakers\n\n Tatiana Ogourtsov a | Keynote speaker\n\n 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 ɬÀï·¬. Her expertise spans the areas of childhood disability\, pediatric neurorehabiltiation\, the us e of novel approaches\, including technology-driven solutions\, telehealth and coaching. Her work focuses on family-centred care\, mental health\, k nowledge mobilization\, development and implementation of evidenced-based clinical practices and use of patient-oriented research. She leads the RES I-ALLIANT KID laboratory with an interdisciplinary team of experts\, clini cians\, parents and youth partners. \n\n Julie Coulombe | Panellist\n\n A pe er family caregiver for the Société québécoise de la schizophrénie et des psychoses apparentées since 2020\, Julie has experiential knowledge as a c aregiver and companion for many families\, allowing her to experience the health care system network in the greater Montreal area\, in child psychia tric and psychiatric hospitals. She collaborates as a citizen researcher w ith the Chaire interdisciplinaire sur la santé et les services sociaux pou r les populations rurales (Interdisciplinary Chair on Health and Social Se rvices 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 P rogram in 2021. She is involved in various areas and projects related to p eer family support\, and her field experience gives her a strong understan ding of the context surrounding issues in the field of health and social s ervices. She is a graduate of the Université de Montréal's undergraduate m icroprogram in mental health and has been working for the National Bank of Canada for 20 years.\n\n Jason Karamchandani | Panellist\n\n \n\n Dr. Jason Karamchandani is a neuropathologist and Associate Professor at ɬÀï·¬ Univ ersity’s Department of Pathology\, based at The Neuro. His work focuses on understanding brain and nerve diseases by studying tissue samples and usi ng data to identify markers that can help diagnose and predict outcomes fo r brain tumours and neuromuscular disorders. He also leads the immunohisto chemistry and special stains division at the ɬÀï·¬ Health Cent re (MUHC) and directs ɬÀ﷬’s Anatomic Pathology residency program. Dr. K aramchandani studied biochemistry at Harvard University and earned his med ical degree as valedictorian from Stanford University. He has published ov er 40 scientific papers and several book chapters on brain and spinal cord tumours.\n\n Maria Masnata | Panellist\n\n Maria is a Clinical trial and co mmunity of practice manager for Muscular Dystrophy Canada and The Neuromus cular Disease Network for Canada. She has over 10 years of experience in c linical and preclinical research in neuroscience\, and received her PhD in Neurobiology from Université Laval in 2021. She developed extensive exper ience in clinical research and project management during her previous role as assistant manager of the investigator-initiated trial team of the Clin ical Research Unit at the Neuro. With a proven track record of managing an d coordinating projects leading to Health Canada-approved trials\, peer-re viewed publications and international presentations\, Maria is committed t o advancing health care and advocating for scientific innovation. \n\n Abbe Lai | Panellist\n\n Abbe is a certified genetic counsellor with over eight years of experience coordinating a neurogenetics specialty clinic at Bost on Children’s Hospital. She has supported hundreds of families by ensuring the ethical and equitable communication of diagnostic results and by help ing identify appropriate resources to meet their needs. Abbe is currently enrolled in a Neuroscience PhD program under Dr. Roberta La Piana at McGil l University.\n\n  \n\n  \n\n Pamela Fortier | Panellist\n\n \n\n \n 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 cond ition that continues to shape her journey. Despite ongoing health challeng es\, Pamela has found strength and purpose through volunteering\, physical activity and creative expression. Her involvement in zoo therapy\, dog wa lking and the arts\, including poetry and slam\, allows her to stay ground ed\, give back to others and continually redefine her sense of self.\n \n\n Linda Lafontaine | Flash Talk Speaker\n\n Linda Lafontaine is a Patient Adv ocate for Hereditary Spastic Paraplegia (HSP). She is an HSP patient and a n active member of the HSP\, Primary lateral sclerosis (PLS) and Ataxia co mmunities. She has worked with multiple foundations\, taken the stage as a speaker at events\, and rallied the HSP\, PLS and Ataxia communities to p articipate in research. Linda works directly with C-BIG\, the open patient biobank at the Neuro within ɬÀï·¬. Linda has established a pa tient-led cohort of HSP patients\, while adding to the existing PLS cohort and introducing many Ataxia patients to C-BIG and the Neuro. Together\, L inda\, C-BIG and the Neuro promote collaboration through Open Science and give patients a way forward.\n\n Gregory Chetkowski | Flash Talk Speaker\n \n Greg Chetkowski is a patient suffering from Spinal Cerebellar Ataxia (SC A) 27B\, a rare hereditary degenerative disease. Greg is a retired airline mechanic\, having worked at Air Canada for 32 years. An avid camper\, hik er\, canoe enthusiast\, golfer and expert skier\, Greg was able to keep ac tive despite a lifetime of vertigo and balance issues. In the last 3 years his  condition has rapidly degenerated with his mobility being severely i mpacted 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 no w benefitting from taking 4-AP (Fampyra-Brand or Fampridine-Generic). Ongo ing clinical trials of the impact of 4-AP on patients suffering from SCA 2 7B have shown remarkable positive results. It is due to this ongoing resea rch that Greg is seeing a significant reduction in his symptoms and a grea t improvement in his quality of life.\n\n Moderators\n\n Alan Evans\n\n \n\n A lan Evans is a James ɬÀï·¬ Professor of Neurology and Neurosurgery\, Psyc hiatry and Biomedical Engineering\, a researcher at the McConnell Brain Im aging Centre\, Co-Director of the Ludmer Centre for Neuroinformatics and M ental Health\, Principal Investigator of CBRAIN\, the Victor Dahdaleh Chai r 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 (Wild er Penfield)\, and the magazine Science has ranked him #6 in a list of the most influential brain scientists of the modern era\, having pioneered th e technique of multi-modal 3D brain imaging.\n\n Roberta La Piana\n\n Dr. Ro berta La Piana is Assistant Professor in the Department of Neurology and N eurosurgery at the Neuro (Montreal Neurological Institute-Hospital). Her r esearch mainly focuses on rare genetic white matter disorders and their ov erlap with more common disorders like multiple sclerosis. In 2013\, Dr. La Piana launched the White Matter Rounds. These interdisciplinary monthly m eetings\, aimed to discuss atypical white matter disease presentations\, h ave evolved into an international network including researchers and clinic ians from more than 15 centres around the world.\n\n  \n\n Sonia Lussier\n\n \n\n A communications professional\, Sonia Lussier has led numerous project s 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-d irector of the patient partner unit at ɬÀï·¬ 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 professiona l musician and conducts choirs in the Montérégie region. \n\n  \n\n Accessib ility and accommodations\n\n  \n\n Please note that the following accommodat ions will be provided at the event:\n\n \n Parking (for those with mobility needs)\n Wheel-chair friendly venue\n Close captioning during presentations \n Live translation into French\n Glossary (to define common medical jargon\ , bilingual)\n Hybrid sessions with option to submit questions beforehand\n Children’s surveillance area (with an accompanying adult\, not a daycare s ervice)\n \n\n  \n\n DTSTART:20251122T160000Z DTEND:20251122T210000Z LOCATION:RI-MUHC SUMMARY:Bridging Gaps: Patient-Oriented Neuroscience Research Symposium URL:/dementia/channels/event/bridging-gaps-patient-ori ented-neuroscience-research-symposium-368974 END:VEVENT END:VCALENDAR