BEGIN:VCALENDAR VERSION:2.0 PRODID:-//132.216.98.100//NONSGML kigkonsult.se iCalcreator 2.20.4// BEGIN:VEVENT UID:20251120T013804EST-6133VKGXiN@132.216.98.100 DTSTAMP:20251120T063804Z 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\, ɬ﷬ faculty and representatives from partner organizations such as Parkinson Québec\, Reg roupement québécois des maladies orphelines (RQMO) and the Société québéco ise de la schizophrénie.\n\nThis event aims to foster patient-researcher p artnerships by making science more accessible to people with lived experie nce\, and to increase awareness and inclusivity for rare diseases of the n ervous 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 Op ening remarks\n\n Speaker: Alan Evans\, Scientific Director of Healthy Brai ns\, Healthy Lives\n \n \n \n 11:05 a.m.-12:00 p.m.\n \n Keynote: The value of p atient partnerships in translational research on developmental disorders\n \n Speaker: Tatiana Ogourtsova\, ɬ﷬\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 posters on brain health-related topics)\n \n \n 2:00-3:00 p.m.\n \n Panel: N avigating the health care system with rare diseases of the nervous system \n\n Panellists:\n\n \n Julie Coulombe\, Société québécoise de la schizophrén ie \n Maria Masnata\, Neuromuscular Disease Network for Canada\n Abbe Lai\, ɬ﷬\n Dr. Jason Karamchandani\, The Neuro (Montreal Neurologi cal Institute-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 a u système 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 Speake rs: \n\n \n Linda Lafontaine\, Canadian ambassador for the Spastic Paraplegi a Foundation\n Gregory Chetkowski\, Patient Partner\n \n \n \n \n 3:45-4:00 p.m.  \n Awards ceremony and closing remarks \n \n \n \n\n Speakers\n\n Tatiana Ogour tsova | Keynote speaker\n\n Tatiana Ogourtsova is an occupational therapist and an Assistant Professor at the School of Physical and Occupational The rapy\, Faculty of Medicine and Health Sciences at ɬ﷬. Her expertise sp ans the areas of childhood disability\, pediatric neurorehabiltiation\, th e use of novel approaches\, including technology-driven solutions\, telehe alth and coaching. Her work focuses on family-centred care\, mental health \, knowledge mobilization\, development and implementation of evidenced-ba sed clinical practices and use of patient-oriented research. She leads the RESI-ALLIANT KID laboratory with an interdisciplinary team of experts\, c linicians\, parents and youth partners. \n\n Julie Coulombe | Panellist\n\n 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 psy chiatric and psychiatric hospitals. She collaborates as a citizen research er with the Chaire interdisciplinaire sur la santé et les services sociaux pour les populations rurales (Interdisciplinary Chair on Health and Socia l 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 ENGA GE Program in 2021. She is involved in various areas and projects related to peer family support\, and her field experience gives her a strong under standing of the context surrounding issues in the field of health and soci al services. She is a graduate of the Université de Montréal's undergradua te microprogram in mental health and has been working for the National Ban k of Canada for 20 years.\n\n \n\n Jason Karamchandani | Panellist\n\n Dr. Ja son Karamchandani is a neuropathologist and Associate Professor at ɬ﷬ University’s Department of Pathology\, based at The Neuro. His work focuse s on understanding brain and nerve diseases by studying tissue samples and using data to identify markers that can help diagnose and predict outcome s for brain tumours and neuromuscular disorders. He also leads the immunoh istochemistry and special stains division at the ɬ﷬ Health Centre (MUHC) and directs ɬ﷬’s Anatomic Pathology residency program. D r. Karamchandani studied biochemistry at Harvard University and earned his medical degree as valedictorian from Stanford University. He has publishe d over 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 an d community of practice manager for Muscular Dystrophy Canada and The Neur omuscular Disease Network for Canada. She has over 10 years of experience in clinical and preclinical research in neuroscience\, and received her Ph D in Neurobiology from Université Laval in 2021. She developed extensive e xperience 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 managin g and coordinating projects leading to Health Canada-approved trials\, pee r-reviewed publications and international presentations\, Maria is committ ed to advancing health care and advocating for scientific innovation. \n\n Abbe Lai | Panellist\n\n Abbe is a certified genetic counsellor with over e ight years of experience coordinating a neurogenetics specialty clinic at Boston Children’s Hospital. She has supported hundreds of families by ensu ring the ethical and equitable communication of diagnostic results and by helping identify appropriate resources to meet their needs. Abbe is curren tly enrolled in a Neuroscience PhD program under Dr. Roberta La Piana at M cGill University.\n\n  \n\n \n\n \n Pamela Fortier | Panellist\n\n Trained as a nurse\, Pamela Fortier was on the path to a career in healthcare when a d iagnosis of a brain tumour and subsequent surgeries changed the course of her life. After years of medical uncertainty\, she was finally diagnosed w ith PTEN hamartoma tumour 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 ɬ﷬. 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 three y ears\, his  condition has rapidly degenerated with his mobility being seve rely impacted to the point of requiring the use of a walker and/or a wheel chair. 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.\n\n Moderators\n\n \n\n Alan Evan s\n\n Alan Evans is a James ɬ﷬ Professor of Neurology and Neurosurgery\ , Psychiatry and Biomedical Engineering\, a researcher at the McConnell Br ain Imaging Centre\, Co-Director of the Ludmer Centre for Neuroinformatics and Mental Health\, Principal Investigator of CBRAIN\, the Victor Dahdale h Chair in Neurosciences and the Scientific Director of HBHL. He was induc ted as a Fellow of the Royal Society of Canada in 2015 and as an Officer o f 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 pionee red the technique of multi-modal 3D brain imaging.\n\n Roberta La Piana\n\n 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 th eir overlap with more common disorders like multiple sclerosis. In 2013\, Dr. La Piana launched the White Matter Rounds. These interdisciplinary mon thly meetings\, aimed to discuss atypical white matter disease presentatio ns\, have evolved into an international network\, including researchers an d clinicians from more than 15 centres around the world.\n\n \n\n Sonia Luss ier\n\n A communications professional\, Sonia Lussier has led numerous proj ects in the fields of health and environment\, notably with cancer patient s. As a patient partner\, Ms. Lussier works with Dr. Tracie Barnett as a c o-director of the patient partner unit at ɬ﷬ for the Unité de soutien au système de santé apprenant (SSA) Québec. She has also served as a patie nt partner mentor with health students for the Bureau du Patient Partenair e (BPP) at Université de Montréal\, and is involved in other patient partn er development projects in Greater Montreal area. Sonia is also a professi onal musician and conducts choirs in the Montérégie region. \n\n \n Accessib ility and accommodations\n\n Please note that the following accommodations 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\, bili ngual)\n Hybrid sessions with option to submit questions beforehand\n Childr en’s surveillance area (with an accompanying adult\, not a daycare service )\n \n\n View details on accessibility and transportation\n\n \n Advisory Comm ittee\n\n \n\n Susan Rich\n\n Susan has been a patient advisor since 2017 aft er waiting 17 months for a complex spinal surgery. She is especially inter ested in access to care and wait times\, integrated care\, and amplifying patient and family voices. Susan has been involved in working groups\, pol icy development and research projects at local\, provincial and federal le vels. Drawing from her own experiences as an “orphan” patient with atypica l autonomic dysfunction\, Susan hopes to encourage conference attendees to look beyond common diagnoses and explore additional areas of research whe re they can make a meaningful difference in people’s lives.\n\n \n\n JoAnne Mosel\n\n 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 patien ts and the public. JoAnne has worked with researchers across Canada\, cont ributing to innovative projects\, including one of the inaugural patient-d riven research initiatives supported by the CIHR SPOR Evidence Alliance. P assionate about empowering patients\, she continues to expand her skills t hrough ongoing education and collaboration.\n\n \n\n Monica Halsey\n\n Monica Halsey is a lived experience educator\, advocate and systems collaborator working at the intersection of healthcare\, education and family engageme nt. 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’s largest children’s rehabilitation hosp ital. Monica embeds the patient and family voice across hospital initiativ es\, including the recent redesign of the autism diagnostic process. She c o-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 educa tion. Monica is also a North American ambassador for the International Soc iety for Patient Engagement Professionals (ISPEP) and is completing a Doct or of Education with a focus on neurodiversity\, inclusive education and s ystem redesign.\n\n \n\n Heather Dyck\n\n Heather Dyck is a patient partner f rom rural northern Saskatchewan\, where she lives in a multigenerational f amily home with enough cats to call herself an official old cat lady. She is actively involved in patient-oriented research and health system improv ement while balancing her own health issues of MS\, psoriatic arthritis\, spondyloarthropathy in most of her spine as well as other autoimmune diagn oses. She is a storyteller and artist and appreciates how communicating us ing art and stories is both impactful for health system leaders and calmin g for patients and families facing challenging situations.\n\n DTSTART:20251122T160000Z DTEND:20251122T210000Z LOCATION:Research Institute of the MUHC - Auditorium / Atrium SUMMARY:Bridging Gaps: A Patient-Oriented Neuroscience Research Symposium URL:/infect-diseases/channels/event/bridging-gaps-pati ent-oriented-neuroscience-research-symposium-368139 END:VEVENT END:VCALENDAR