The Neuromuscular Disease Network for Canada

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Meet the Team

Steering Committee

The Steering Committee provides overall scientific leadership, direction, and oversight. Its members are responsible for overseeing progress and coordination between the different work strands, operations, administration, budget, and interaction with knowledge users. They are accountable for the delivery of the scientific milestones and the effective administration of the project.

Hanns Lochmüller

Dr Hanns Lochmüller leads the NMD4C network. He is a neurologist and clinical academic specializing in neuromuscular disorders. He is Senior Scientist at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute and Professor of Neurology at the University of Ottawa and the Division of Neurology at The Ottawa Hospital.

James Dowling

Dr James Dowling is Associate Professor of Paediatrics and Molecular Genetics at the University of Toronto, and a Neurologist and Senior Scientist at the Hospital for Sick Children. He represents paediatric NMDs as a member of the NMD4C Steering Committee, leads on genomics education and curriculum, and participates in trial coordination.

Jodi Warman Chardon

Dr Jodi Warman Chardon is Assistant Professor of Neurology at University of Ottawa, Director of the Ottawa Hospital Neuromuscular Centre and co-Director of the uOttawa Centre for Neuromuscular Disease. She represents adult NMDs on the NMD4C Steering Committee and participates in genomics education.

Rashmi Kothary

Dr Rashmi Kothary is the Deputy Scientific Director and Senior Scientist at the Ottawa Hospital Research Institute (OHRI). He represents basic science as a member of the NMD4C Steering Committee.

Stacey Lintern

Stacey is CEO of Muscular Dystrophy Canada (MDC). She represents MDC on the NMD4C steering committee. Stacey holds degrees in nursing and non-profit business management as well as a Human Resources Certificate. She has worked in the not-for-profit sector for over 20 years.

Investigators

Bernard Brais

Dr Bernard Brais is Professor of Neurology and Human Genetics at McGill University in Montreal and co-director of the Montreal Neurological Institute’s Rare Neurological Diseases Group. His lab has focused on identifying new genes and mutations that cause hereditary diseases that are more prevalent in the French Canadian population of Quebec due to founder effects.

Craig Campbell

Dr Craig Campbell is affiliated with the Thames Valley Children’s Centre and the Pediatric Neurophysiology Laboratory at Children’s Hospital London Health Sciences Centre. He is a Full Professor in Pediatrics, Clinical Neurological Sciences and Epidemiology at Western University and a Scientist at the Children’s Health Research Institute.

Cynthia Gagnon

Dr Cynthia Gagnon is a professor at the School of Rehabilitation at the University of Sherbrooke and a researcher at the Centre de recherche Charles-Le Moyne-Saguenay-Lac-St-Jean sur les innovations en santé. Her work aims at improving clinical care and speeding up trial readiness in the most prevalent neuromuscular diseases in Canada. Within NMD4C, Cynthia is lead for knowledge translation.

Daria Wojtal

Dr. Daria Wojtal is the Director of Research at Muscular Dystrophy Canada. In her current role at MDC Daria oversees Research Investments including the design, implementation and monitoring of comprehensive business strategies, budgets, plans and procedures related to the research portfolio and its funding opportunities as well as the generation and review of medical and scientific educational content.

Homira Osman

Dr. Homira Osman is the VP of Research & Public Policy at Muscular Dystrophy Canada. Her background is in clinical audiology, neuroscience research and knowledge translation. In her role, Dr. Osman has overall strategic and operational responsibility for all elements of research, knowledge translation, clinical relationships and advocacy work at MDC. Within NMD4C, Homira serves as the patient-engagement lead and contributes to all of the work packages.

Hugh McMillan

Dr Hugh McMillan is an Associate Professor of Pediatrics at the University of Ottawa, a Pediatric Neurologist and Neuromuscular specialist at the Children’s Hospital of Eastern Ontario (CHEO) and a Clinical Investigator at the CHEO Research Institute.

Kathryn Selby

Dr Kathryn Selby is Clinical Assistant Professor at the University of British Columbia, Medical Director of the pediatric neuromuscular program of BC and the Yukon, and an investigator at BC Children’s Hospital Research Institute.

Lawrence Korngut

Dr Lawrence Korngut is a neurologist, clinical neurophysiologist and Director of the Calgary Neuromuscular Program and the Calgary ALS and Motor Neuron Disease Clinic. He is the former chair of the CAN-NMD network and is involved in the NMD4C work on trial capacity building.

Maryam Oskoui

Dr Maryam Oskoui is an Associate Professor in the Departments of Pediatrics and Neurology and Neurosurgery at McGill University and Associate Member of the Department of Epidemiology and Biostatistics.

Nicola Worsfold

Nicola is the Director of Research and Advocacy at Jesse’s Journey and the mom of a boy with Duchenne muscular dystrophy. Educated in genetics and molecular biology, she spent the last 15 years working in biotech and the pharmaceutical industry in areas of infectious disease and hepatology, and later spent most of her time in medical affairs focused in neurology and rare disease.

Reshma Amin

Dr Reshma Amin is Associate Professor at the University of Toronto; Respirologist and Sleep Physician at SickKids; and Associate Scientist, Child Health and Evaluative Sciences at SickKids Research Institute. Within NMD4C Reshma is working on the development of clinical care guidelines for NMDs and patient advocacy training modules for NMD.

Teresa Buffone

Teresa Buffone leads the Ottawa-Gatineau Myotonic Dystrophy Support Group and is an advocate for the US Myotonic Dystrophy Foundation. Within NMD4C she works with MDC and other knowledge user representatives on knowledge translation to the patient community.

Headquarters Staff

Erin Beattie

Dr. Erin Beattie is the Network Manager for NMD4C. She graduated with a BSc in microbiology & immunology and an MSc in pharmacology from Dalhousie University, and a PhD in laboratory medicine & pathobiology from the University of Toronto.

James Davis

James is the NMD4C Communications Coordinator. He writes and coordinates all network communications including news updates, the monthly newsletter, the website, and the social media (Twitter, Facebook, and LinkedIn). He also manages memberships and liaises with the many people and sites involved in the network.

Collaborators

Aaron Izenberg

Dr. Izenberg’s clinical focus is in the diagnosis and management of patients with neuromuscular and neurological disease. He has particular interest in management of motor neuron diseases (including ALS and SMA), myopathy, myasthenia gravis, peripheral neuropathy, as well as urgent neurology.

Bonnie Wooten

Bonnie Wooten is the NMD4C Clinical Trial Concierge. Bonnie is a Registered Nurse and project lead and decision coach for pediatrics and families affected by NMDs at Children’s Hospital, LHSC.

Hernan Gonorazky

Dr. Gonorazky co-leads the NMD4C’s work in developing a clinical research curriculum for neuromuscular fellowship programs. Dr. Gonorazky graduated from medical school at University of Buenos Aires. He completed his residency in adult neurology and afterward he did his specialization in adult neuromuscular disorders. He continued his studies in paediatric neuromuscular disorders at Sickkids in 2014 and became a permanent Staff in 2019.

Jason Karamchandani

Dr. Jason Karamchandani is an Associate Professor in the Department of Pathology, and is a neuropathologist at The Montreal Neurological Institute and Hospital. His clinical specialty is neuropathology and anatomic pathology. His laboratory at the Neuro examines pathologies of both the central nervous system as well as neuromuscular disease.

Joshua Lounsberry

As National Director of Operations Josh Lounsberry oversees all aspects of the Canadian Neuromuscular Disease Registry including business operations, research planning, and strategic partnerships. He has over a decade managing teams in medical research, is a published researcher, and has an MBA.

Kim Amburgey

Kimberly Amburgey received her Master’s degree in genetic counseling from the University of Pittsburgh.  She is currently the genetic counselor in the Pediatric Neuromuscular Clinic at the Hospital for Sick Children in Toronto.  Kimberly is an instructor in the Department of Molecular Genetics at the University of Toronto.  She also a member of the Canadian rare disease organization, Canadian Gene Cure Advanced Therapies for Rare Disease (Can-GARD).

Patricia Mortenson

Patricia is an Occupational Therapist at BC Children’s Hospital in Vancouver, where she has worked in the Neuromuscular Clinic, among other clinical areas, for many years. In the NMD4C Network, Patricia is involved as Project Coordinator for the Expert Patient Capacity Building Team and will be developing training modules and resources for both patients and researchers to support patient oriented neuromuscular research in Canada.

Perry Esler

Perry Esler is Executive Director of Jesse’s Journey, Canada’s largest Duchenne-focused charity. He works as part of the NMD4C knowledge user group with a focus on knowledge translation for Duchenne families.

Rhiannon Hicks

Rhiannon graduated from Western University with a Bachelor’s degree in biology. She is the project manager for the Pediatric Neuromuscular Research Program at Children’s Hospital – London Health Sciences Centre, with 13 years experience with the team.  Her work within the NMD4C will focus on the development of a clinical trial network and comprehensive research curriculum.

Rochelle ten Haaf

With more than 13 years of experience in both Canada and the UK, Rochelle ten Haaf is passionate about working in the non-profit sector. Her focus is to help health care charities turn consideration into action through the power of marketing and communications and she brings the same enthusiasm to defeat Duchenne muscular dystrophy at Jesse’s Journey.

Valérie Gagné-Ouellet

Valérie Gagné-Ouellet is a knowledge broker for NMD4C, translating evidence into action in health care. She has a Ph.D. in biochemistry and functional genomics from the Université de Sherbrooke in the field of epigenetics and fetal metabolic programming.

Victoria Hodgkinson

Dr. Hodgkinson is the National Program Manager for the Canadian Neuromuscular Disease Registry, where she oversees the scientific management and coordination of national patient registries in neuromuscular disease.