Véronique Adam, respiratory therapist

For over 15 years, Véronique Adam has been working as respiratory therapist for the National Program for Home Ventilatory Assistance, where she has gained extensive expertise with adult and pediatric clients under home mechanical ventilation. She is currently in charge of training and development and takes part in research studies, the quality management of clinical services, and the development of NPHVA services.

She is also Vice-President of the Canadian Respiratory Therapy Home Ventilation Network, which is a committee of the Canadian Society of Respiratory Therapists (CSRT) that offers respiratory therapists who practice home ventilation assistance a forum to share their knowledge and promote best practices throughout Canada.

 

Julie Bouchard, Ph. D., has been Associate Professor at Université du Québec à Chicoutimi since 2008. She holds a Ph.D. in research and intervention in clinical neuropsychology from Université du Québec à Montréal. Her fields of expertise include the psychological and cognitive aspects influencing the social participation of people with ataxia of Charlevoix-Saguenay, socio-occupational re-integration, and the development of new approaches to rehabilitation for people with neuropsychological damage (children, adults and seniors), including Alzheimer’s, ADHD, CBT,  and ataxia of Charlevoix-Saguenay. Professor Bouchard has been working with the GRIMN since 2008. She has supervised (and still supervises) many graduate psychology students.

 

Dr Laurent Ballaz is professor in the department of physical activity sciences at UQAM. His research topics focus on gait efficiency and postural control mechanisms in children with neurological and neuromuscular diseases. He demonstrated the positive effects of physical exercise on gait and postural control in children with cerebral palsy and neuromuscular disease. Since January of 2013, he is the director of the Gait Laboratory at Marie-Enfant rehabilitation center (Sainte-Justine University Hospital), which aims to develop the most important children gait analysis database in Quebec. More recently, he evaluated the potential of using active video games in rehabilitation process and, in collaboration with local company, his team develops adapted games to assess and train dynamic postural control. His program research is funded by the “Fond de Recherche Québec- Santé” and the Natural Sciences and Engineering Research Council.

 

Dax Bourcier is currently an MD candidate studying at Université de Sherbrooke. Following the completion of his undergraduate degree with first class honours in microbiology and immunology and a minor in business, he worked as an employability and entrepreneurship advisor in Dakar, Senegal, for eight months. Not only has this experience helped develop his business side, but it also sparked his motivation to promote advancement in his community. This willingness translated into his role as president of his medical school in Moncton, and in his involvement with population health in New Brunswick. Dax is an avid rugby player and has also traveled to 17 different countries. Last summer, he undertook a research internship on the identification and care of patients with rare genetic neuromuscular diseases. He is now anticipating pursuing an MD/MSc on a newly discovered titinopathy in New-Brunswick. With an upcoming publication, he presents today “A novel homozygous mutation in the TTN gene in patients from New Brunswick causes skeletal muscle pathology without cardiomyopathy”.

 

Kevin Brassard, D. Psy candidate, is a third-year doctoral student in clinical psychology, neuropsychology profile, at Université du Québec à Chicoutimi. An FRQSC and SSHRC award recipient, he wrote his doctoral thesis (under the direction of Dre Julie Bouchard) on the cognitive functioning and social participation of individuals with autosomal recessive spastic ataxia of Charlevoix-Saguenay. His research interests also focus on the selection of those psychometric evaluation tools that are better adapted to clients with neuromuscular disorders. Since 2014, Mr. Brassard is a collaborator of the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaire) affiliated to the CIUSSS of Saguenay—Lac-Saint-Jean, under the supervision of Professor Cynthia Gagnon

 

Dr. Craig Campbell is the Deputy Chair of Pediatrics (Research), the head of the Division of Pediatric Neurology and the medical director of the multidisciplinary neuromuscular clinic based at Thames Valley Children’s Centre and the Pediatric Neurophysiology Laboratory at Children’s Hospital London Health Sciences Centre.  He is an Associate Professor in Pediatrics, Clinical Neurological Sciences and Epidemiology at Western University and a Scientist at the Children’s Health Research Institute. His training in Pediatrics and Neurology and Epidemiology was completed at the University of Ottawa. Clinical trial work in DMD patients has been an area of academic activity, and Dr. Campbell is collaboratively involved in many academic and industry initiated clinical trial activities in pediatric neuromuscular disease. He is a member of the Muscle Study Group, World Muscle Society, and co-chair of the TREAT-NMD Registry Oversight Committee and Task Force. Dr. Campbell has been awarded the George Karpati Award Researcher of the Year in 2011 and 2015, Muscular Dystrophy Canada.

 

Resi Contardo

Mrs Contardo is an occupational therapist who graduated from McGill University and has a master degree in education.
She works with children who are severely disabled in an AAC and specialized acces and mobility clinic at Sainte Justine's-Marie-Enfant Rehab Center.  She participates in research and development of products related to technology in paeds.

 

Claudia Côté holds a Master’s degree in clinical science research. Since 2016, she has been working as research professional at the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires), an interdisciplinary research group on neuromuscular disorders. She is also pursuing her doctoral studies in health science research at the Université de Sherbrooke, under the supervision of Cynthia Gagnon and Dr. Bernard Brais.

 

Isabelle Côté is research coordinator for the GRIMN, directed by Cynthia Gagnon. She holds a Bachelor’s degree in biology (2005-2008) and a Master’s in renewable resources, biochemistry stream (2008-2011), from the Université du Québec à Chicoutimi. She started working for the GRIMN in 2011 as a research professional and is now coordinator. Throughout the years, the research group has developed an expertise regarding the metrological quality of tools and evaluation questionnaires for people with neuromuscular disorders, mainly Type 1 myotonic dystrophy and the autosomal recessive spastic ataxia of Charlevoix-Saguenay. For her part, Isabelle has developed an expertise in statistical analysis and the drafting of scientific publications relating to those metrological qualities.

 

Dr Nicolas Chrestian did his adult neurology training at Laval University then completed his training in pediatric neurology at McGill University. He had the opportunity to work with Dr Maryam Oskoui and Dr Chantal Poulin during his training at McGill. He is currently performing his clinical fellowship in Pediatric Neuromuscular Disorders under the supervision of Dr Jiri Vajsar, Dr James Dowling, Dr Hans Katzberg and Dr Grace Yoon at the hospital for sick children of Toronto. He came back as staff member in the pediatric neurology team of Quebec City with his subspeciality in neuromuscular disorders and neurogenetic.

 

Elise Duchesne, P.T., Ph.D.

Associate Professor at UQAC’s Physical Therapy Teaching Unit

Professor Duchesne graduated in 2006 from Université Laval’s Physical Therapy Program. Her love of research led her to pursue a Master’s degree in physiology-endocrinology at Université Laval from 2006 to 2008. In 2008, she then goes directly to doctoral studies in that same program, which she’ll complete at the end of 2012. She wrote her thesis on muscular injuries and more specifically on the contribution of mastocytes to the repair process and on the identification of an alternative mechanism contributing to the accumulation of macrophages. In January 2012, Professor Duchesne is hired as Professor/researcher at the Physical Therapy Teaching Unit of the Université du Québec à Chicoutimi. Since then, she has played an active role in the start-up of this new program, including assuming the role of interim director twice: September 2013- January 2014, and September 2015-December 2016. Concomitantly, she has started her research program as an independent researcher. She is still interested in studying skeletal muscle, but in relation to hereditary disorders found in the Saguenay—Lac-Saint-Jean region of Quebec, more particularly Type 1 myotonic dystrophy and the autosomal recessive spastic ataxia of Charlevoix-Saguenay. Since she arrived, she has joined the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaire), to which she brings her expertise in basic research.

 

Dr. Nicolas Dupré is a neurologist at the University Hospital of Québec-Université Laval, Associate Professor in the Department of Medicine of the Faculty of Medicine at Laval University, and Director of the Clinic for Neuromuscular and Neurogenetic Diseases at the hospital CHU de Québec – Université Laval.

Dr. Dupré did his medical training at McGill University and his residency in neurology at Laval University. He completed his postdoctoral training at the Montreal Neurological Hospital and Institute and at Harvard University. In 2007, he discovered a gene (syne-1) implicated in a new form of hereditary ataxia common in the world. Dr. Dupré also played an important role in the discovery of the TARDBP gene’s involvement in the etiology of amyotrophic lateral sclerosis. He is now involved in several provincial, national and international networks that contribute to the discovery of genes involved in neurodevelopmental diseases. He has generated more than 100 original publications. Dr. Dupré's remarkable achievements have earned him several awards, including the 2015 Quebec Society of Muscular Dystrophy Award – ALS component - in association with his Clinic for Neuromuscular and Neurogenetic Diseases.

 

Dr. Anne Fournier obtained her medical degree from the University of Montreal (UdM) in 1980. After training in pediatrics (1981-1983) and Pediatric Cardiology (1983-1984, 1985-1986) at CHU Sainte-Justine (CHUSJ), UdM, she completed a fellowship in pediatric cardiac electrophysiology at Jackson Memorial Hospital, University of Miami, and Texas Children's Hospital, Baylor College of Medicine, Houston from 1984 to 1985. In 1986, she joined the division of pediatric cardiology at CHU Sainte-Justine as head of Electrophysiology. Dr. Fournier has developed expertise in cardiac-related dysfunction associated with neuro-muscular diseases and pediatric pulmonary hypertension. She has developed a large network of pediatric cardiology outreach clinics throughout the province of Quebec, (more than 6,000 visits per year in medical centers affiliated with CHUSJ). She is the founding member of the Quebec Foundation for Children with Heart Disease (Fondation En Coeur) where she is an active member of the board of directors. En Coeur funds the outreach pediatric cardiology clinic and facilitates accommodation of parents of children requiring hospital stays away from home. In 2012, she was awarded a prize for social involvement by the Faculty of Medicine of the UdM. Dr. Fournier is involved in many clinical research projects and is co-author of 20 book chapters, 130 publications and more than 350 scientific presentations. She is regularly invited to give lectures and courses at provincial, national and international level. In 2014, she received the Clinical Excellence Award from the Department of Pediatrics of the UdM in recognition of her excellence in leadership and clinical innovation.

 

Geneviève Forgues (B.A. Psychology) is a doctoral student in clinical psychology at Université du Québec à Chicoutimi. Her doctoral project concerns the personality and psychopathological aspects involved in the autosomal recessive spastic ataxia of Charlevoix-Saguenay, under the supervision of Julie Bouchard (Ph. D.) and Benjamin Gallais (Ph. D.). Since 2014, Geneviève has been working with the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires), an interdisciplinary research group on neuromuscular disorders.

 

Benjamin Gallais is a researcher at ÉCOBES – Recherche et transfert, an organization dedicated to research in applied social sciences, since 2018. A clinical psychologist in France specializing in the psychological monitoring of people with neuromuscular disorders (NMDs), he came to Québec to complete his training as researcher in a postdoctoral position at the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires) in Jonquière. Drawing on an integrative theoretical framework combining health psychology and neuropsychology, he is particularly interested by the characterization of personality and the damage to cognitive functions in NMDs, their evolution and their impact on the psychological adaptation, autonomy and social participation capacities. He is also interested by the other functional consequences of central nervous system damage, such as fatigue and motivation disorders, as well as by the relations between CNS function and personality. Benjamen Gallais is currently developing a research program based on interventions and technological innovations to support the health management of people with Type 1 myotonic dystrophy (MD1). It is important to him that his research projects reflect clients’ needs and that the results be transferable to improve the care of relevant people. His specific expertise in the study of MD1 is internationally recognized. His skills as a researcher cover the demonstration of the psychometric qualities of measurement tools and quantitative analysis. He is a lecturer and adjunct Professor at the Department of Health Sciences at Université du Québec à Chicoutimi and lecturer at Université de Sherbrooke.

 

Véronique Gauthier, M.Sc., has been a third-line research professional at the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuro musculaires), an interdisciplinary research group on neuromuscular disorders, since July 2017, with researchers Cynthia Gagnon and Jean Mathieu. She is also pursuing her doctoral studies in social service at Université Laval and a SSHRC award recipient. She also holds a Master’s degree in Social Work from Université du Québec à Chicoutimi (UQAC). From 2010 to 2013, she worked as a CIRRIS (Center for Interdisciplinary Research in Rehabilitation and Social Integration) research professional at the Institut de réadaptation en déficience physique de Québec (IRDPQ), with researchers Ernesto Morales, Marie-Ève-Lamontagne, Geoffrey Edwards, Brad McFadyen and Frédérique Courtois. In 2016-2017, she worked in first-line health at the Saguenay CIUSSS with researchers Marie-Ève Poitras, France Légaré, Catherine Hudon and Maud-Christine Chouinard. Her research interests include: handicaps, patient-focused research, partner patients, social participation, participative research, gerontology, psychosocial interventions, sexuality, violence, empowerment, prevention, and interventions in crisis situations.

 

Sophie Girard, Executive Director, CORAMH

Sophie Girard holds a Bachelor’s degree in Political Science and completed her Master’s in Regional Studies and Interventions at Université du Québec à Chicoutimi in 2001. She has extensive experience in management, public relations and business development. Executive Director of the CORAMH since 2009, she previously held positions as Executive Director of the Chamber of Commerce and of Muscular Dystrophy Canada. Born in the Lac-Saint-Jean region, and with a family history related to hereditary diseases, Sophie Girard has always advocated for this issue that affects more specifically the people of that region.

 

Véronika Kost

Psychosocial counsellor at the ALS Society of Quebec, Veronica Kost accompanies people with Amyotrophic Lateral Sclerosis and their families by providing psychosocial support and creating opportunities for community building. Veronica holds a Master’s degree in social work from McGill University, and has special interests in disability, family health and wellbeing.

 

Cécilia Légaré is a doctoral student in biochemistry at Université de Sherbrooke working with the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires) et the ECOGENE-21 Biocluster lab. 

 

Isabelle Lessard has completed her training in physical therapy in 2001. She holds a Master’s degree in clinical science research and is presently completing a doctorate in health sciences research at Université de Sherbrooke under the supervision of Cynthia Gagnon and Luc J. Hébert.

 

Mélissa Martel is a physical therapist at the CHU Sainte-Justine’s Marie Enfant Rehabilitation Centre (CRME), and has been working with clients with neuromuscular disorders (NMDs) since 2011. Since 2015, she teaches NMDs as part of the neurology course at Université de Montréal (clinical portion). Since coming to the CRME, she has implemented an adapted dance program for youths with Charcot-Marie-Tooth disease (CMT), which resulted in a pilot project and two clinical trials in 2015 and 2016. A publication on this subject was also submitted. Mélissa has also taken part in the French translation of the CMT Pediatric Scale, a validated scale in English for CMT assessment. An article was also published on this subject. In addition, Mélissa has followed a specific training in the biomechanical analysis of the ankle/foot complex, and is actively working to implement new practices aimed at optimizing the work of physical therapists. A clinical project has been underway since the winter of 2016 to evaluate the impact of a new plantar orthosis design based on objective foot measurements. This project has received a grant from the CHU Sainte-Justine’s Multidisciplinary Council. Mélissa is actively working with her clients to improve their quality of life and optimize their social participation. In 2015, the CHU Sainte-Justine’s Multidisciplinary Council awarded Mélissa the Prix de la relève for her engagement with clients and her participation in research.

 

Dr. Jean Mathieu, neurologist, is Associate Professor at the Faculty of Medicine and Health Sciences at Université de Sherbrooke. He also chairs the Research Ethics Committee of the Saguenay—Lac-Saint-Jean CIUSSS and is Medical Coordinator of the neuromuscular clinic of the Regional Physical Rehabilitation Centre of Saguenay—Lac-Saint-Jean.

 

From 2014 to 2016, Dr. Mathieu was part of the MSSS’s Multidisciplinary Support Group for Medical Help in Dying that produced the guidelines for the processing of requests for medical aid in dying. Since 2015, he is Coordinator of the Saguenay—Lac-Saint-Jean Interdisciplinary Support Group (ISG) for Medical Aid in Dying. Since 2016, he is also a member of the coordination committee for the Provincial Practice Community of ISGs on medical aid in dying.

 

Chantal Morency, MD

Chief of the palliative care team at L’Enfant-Jésus Hospital (HEJ) and the palliative care unit of the Charlesbourg CHSLD.

Practicing exclusively in palliative care since 2003.

Resident doctor for ALS clients since 2013 at the HEJ external clinic of the CHU Québec.

 

Samar Muslemani is an occupational therapy student at Sherbrooke University. She is also a research assistant with the Interdisciplinary Research Group on Neuromuscular Disorders and will begin a research master next year, under the supervision of Cynthia Gagnon and Benjamin Gallais.

 

Cam-Tu Émilie Nguyen

Pediatric neurologist at the CHU Sainte-Justine and at the neuromuscular clinic of the CHU Sainte-Justine’s Marie Enfant Rehabilitation Centre.

Internship in pediatric neurology at the Université de Montréal’s CHU Sainte-Justine.

Training (fellowship) in neuromuscular and electromyography at McGill, at the London Health Sciences Centre (London, Ontario) and at the SickKids Hospital (Toronto, Ontario) under the supervision of Dr. Bernard Brais, Dr. Craig Campbell and Dr. James Dowling.

EMG graduate, member of the Canadian Society of Clinical Neurophysiologists.

 

 

Kateri Raymond is a trained occupational therapist. She is currently pursuing her doctoral studies in health science research at Université de Sherbrooke’s GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires), an interdisciplinary research group on neuromuscular disorders. Since beginning her training, she has taken part in several research projects on Type 1 myotonic dystrophy. Among others, she has worked on the feasibility of a self-management program for affected people and their families, on changes in the capacity of upper limbs, social participation throughout the years, and the improvement of the practice of occupational therapists working with people with Type 1 myotonic dystrophy.

 

Fernanda Ribeiro received her Bachelor in Physiotherapy from the Catholic University of Brasilia (Brazil), her specialization in Respiratory Physiotherapy and her Master of Science (Health Sciences) from the University of Brasilia. She is a PhD candidate in Experimental Medicine at Laval University, Canada.

Currently, she is an assistant professor at University of Quebec at Chicoutimi (UQAC), Canada, primarily teaching cardiorespiratory physiology and rehabilitation. She has also started research collaborations in the Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN) focusing on cardiorespiratory function during exercise in patients with Myotonic Dystrophy type 1 (DM1). Her research interests include the integration between cardiorespiratory impairments and exercise capacity in neuromuscular diseases and in multimorbidity. She has published articles in peer-reviewed journals on locomotor muscles’ oxygenation and function evaluation in patients with chronic respiratory diseases, including some collaborations related to muscle function in other diseases as cancer and pulmonary hypertension.

Before being dedicated full time to teaching and research, she has worked as a physiotherapist at Brazil’s largest rehabilitation hospital (SARAH Network) and, for 6 years, at the intensive care unit of the Army Forces Hospital of Brasilia, specializing in the treatment of cardiorespiratory conditions in neuromuscular diseases and in general acute care.

 

Xavier Rodrigue

Physiatrist for the past 3 ½ years

Fellowship in neuromuscular disorders at Jonquière and the CRME

Work experience: worked for 2 years at the CRME (2015-2017)

For the past 3 ½ years:

     - Clinical Officer, NMD at the IRDPQ HAMEL SITE

     - Clinical Officer, NMD CHARLEVOIX

     - Team member, ALS-HEJ

     -Team member, NMD-Ped at the IRDPQ, ST-LOUIS SITE

     -Clinical Consultant, NMD, at Le Parcours in Jonquière

 

Marie-Pier Roussel graduated from Université Laval’s continuum baccalauréat-maîtrise en physiothérapie program in 2013 with the research orientation. From 2013 to 2015, she worked as a physical therapist in rehabilitation centers (Institut de réadaptation en déficience physique de Québec and Centre de réadaptation en déficience physique de Chaudière-Appalaches). In 2015, she begins her master’s degree in médecine expérimentale at Université du Québec à Chicoutimi (UQAC) under the supervision of professor Elise Duchesne and in collaboration with the Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN). In 2017, she completes her master’s degree and starts her PhD in biology at UQAC to continue her research projects. Her graduate work focuses on the study of skeletal muscle in people affected with myotonic dystrophy type 1 (DM1).

 

François Routhier has a background in Mechanical Engineering (BSc and MSc) as well as in Rehabilitation (PhD) from Université Laval. He also completed four years of postdoctoral training at Dalhousie University and Université de Montréal. Since September 2008, he is a researcher at the CIUSS de la Capitale-Nationale’s Centre for interdisciplinary research in rehabilitation and social integration (CIRRIS), where is based the Institut de réadaptation en déficience physique de Québec, and where, since 2011, he has been in charge of the research axis on Environmental Determinants of Social Participation. He is currently Associate Professor at Université Laval’s Department of Rehabilitation, a position he has held since 2011. 

 His research interests focus on the evaluation of the effectiveness, effects and impacts of assistive devices in general, particularly the robotic assistive devices for upper limbs. His very intersectoral research activities require different research approaches, methods and designs: development and validation of questionnaire-type measuring instruments; development and validation of electronic systems for measuring activity; biomechanical evaluations; qualitative studies; cohorts monitoring; randomized controlled trials; etc. A significant part of his activities are related to knowledge transfer. In this context, over the last twenty years, he has maintained, important ties with various assistive technology programs and other clinical programs in order to bring the results of his research to clinicians and users, and to support the clinicians and managers in changing their practices.

 

Anne-Sophie St-Pierre-Clément received her degree in social work from Université de Montréal. Since 2014, she is working at the neuromuscular disorder program of the Marie Enfant Rehabilitation Centre of the CHU Sainte-Justine. She is currently a social work Master’s candidate at UQAM and her thesis focuses on the transition to adult care for youth with a neuromuscular disorder and how parents see their child’s independence.

 

Raphaël St-Gelais

Raphaël St-Gelais recently received a professional Master’s degree in physical therapy from McGill University, through its extension at Université du Québec in Chicoutimi (UQAC). Throughout his training, he has developed a special interest for research, accentuated by a position as research assistant during the summer of 2014. As soon as he graduated, he started a Master’s degree in health sciences in the fall of 2017 at Université de Sherbrooke. He trained at the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires) within the CIUSSS Saguenay—Lac-Saint-Jean. His current interest is in mobility-related impairments in people with autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS)

 

Catherine Savard has been a family doctor in Jonquière since 2012.  She practices at her office, in rehabilitation and also teaches students at the Université de Sherbrooke delocalized site in Saguenay. As part of various research projects, Dr. Savard does muscular biopsies for Jonquière neuromuscular clients with one of her colleagues. Since she became a general practioner, she has been working as a family doctor with DM1 clients. From 2003 to 2005, she has also worked as an occupational therapist with clients from the Jonquière neuromuscular clinic and rehabilitation centre. Since 2014, she is Chief of medical services at the Intensive Functional Rehabilitation Unit of the CRPD Le Parcours in Jonquière.

 

Jean-Guillaume Simard, Ph. D. (Regional Development)A teacher at CÉGEP de Jonquière’s Department of Urban Development and Planning Techniques, Jean-Guillaume Simard is involved in developing several research projects with ÉCOBES–Recherche et transfert, an organization dedicated to research in applied social sciences. More specifically, he is working with the Jonquière Neuromuscular Clinic on a project to analyze the logics of people with neuromuscular disorders' residential choices as they relate to the socio-economic characteristics of their residential neighbourhood and their level of access to services. His expertise focuses on regional and rural development, the sociogeography of education and health, as well as land use and urban planning. He shows strong interest for issues related to the monitoring of school indicators and living conditions, accessibility of health services, and spatial epidemiology.

 

Dr. Jacques P. Tremblay completed his doctorate in neurosciences at the California University at San Diego in 1974. Since then, he has been a postdoctoral researcher at Université Laval, Professor and Director of the Department of Anatomy. He is currently Professor at the Department of Molecular Medicine. He has published over 260 scientific papers on hereditary diseases, and has worked more specifically on myoblast transplants as a treatment for Duchenne muscular dystrophy. Over the past three years, he has also worked on correcting genes with the CRISPR / Cas9 technology for Duchenne muscular dystrophy, Friedreich’s ataxia and Alzheimer’s disease.

 

Marjolaine Tremblay holds a Master’s degree in social work from UQAC. Since 2011, she is a research professional at the GRIMN (Groupe de recherche interdisciplinaire sur les maladies neuromusculaires), an interdisciplinary research group on neuromuscular disorders, and a doctoral student in health science research at Université de Sherbrooke, under the supervision of Cynthia Gagnon and Dr. Bernard Brais.

 

Sarah Turgeon Désilets

Sarah Turgeon Désilets is a McGill University physical therapy graduate. Over the last few years, she has developed an expertise in pediatric physical therapy. In 2017, she completed a certificate in health administration from the Lausanne University in Switzerland. She has been working at the Montreal Children’s Hospital since 2014, specializing in clients with developmental delays and with children with neuromuscular disorders.

 

Dr. David Zielinski is a pediatric respirologist at the Montreal Children's Hospital with a special interest in neuromuscular disease and invasive and non-invasive home mechanical ventilation at home.   He was a co-author of the recent Canadian Thoracic Society Pediatric Home Ventilation Guidelines and currently serves as the Pediatric Medical Director for the National Program for Home Ventilatory Assistance (NPHVA).   He is also the past chair of the Neuromuscular and Home Mechanical Ventilation Network at the American College of Chest Physicians and is Director of the McGill Pediatric Respirology Program.