Jonathan-Bouchard Intellectual Disability Research Chair
Intellectual disability: two highly-charged words that signify a reality not discussed enough in the public sphere, a reality that constitutes one of the most severe childhood disabilities and about which we hear very little.
Close to 160,000 Quebecers have intellectual disabilities of various types, which are often associated with epilepsy, behavioural disorders and certain forms of autism. Some people with intellectual disabilities live quite independently, while others have severe limitations with respect to mobility or the ability to speak.
The Healing More Better campaign has allowed us to establish the Jonathan-Bouchard Intellectual Disability Research Chair, the first of its kind in Canada!
This chair is helping us open previously tightly closed doors. By analyzing the genome of each child, we’ll be able to decipher exactly which gene is responsible for the disability. Once it’s been identified, we’ll be able to try to understand the gene’s role in neuronal development and, in certain cases, limit its impact.
Using biochemicals, researchers and students at the Jonathan-Bouchard Intellectual Disability Research Chair have been able to neutralize in mice the function of the SYNGAP gene, which is responsible for a wide variety of intellectual disabilities in animals as well as in humans. Other teams have been able to introduce “spies” into patients’ neuronal circuits to identify the role of the affected genes using new techniques that allow blood stem cells to be transformed into neurons.
Until only recently, such a feat would have been totally unimaginable! This is a pivotal moment for us and, thanks to you, we are leading the way!
Integrated Centre for Child Neurodevelopment (CIRENE)
Delays in language development, learning disabilities, attention deficits, autism, epilepsy and other neurodevelopmental disorders are complex and multifaceted. They affect approximately 17% of the population, including many preschoolers, at that stage in life when they are the hardest to diagnose. Led by Dr. Lionel Carmant, CIRENE is having a game-changing effect in this area in Quebec.
The only centre of its kind in North America, CIRENE provides mass screening, early detection and personalized treatment through its integrated clinics (genetics, neurology, psychology, speech therapy, etc.). This central intake centre coordinates new pharmacological, behavioural and psychosocial intervention strategies, and virtually connects health sector practitioners, community partners and parents via the AIDE platform, developed at Johns Hopkins University as the Child Health & Development Interactive System.
Thanks to your support of our Healing More Better campaign, this tool was translated into French and adapted for Quebec by the CIRENE team.
Through collaborative action, this network enables earlier screening that allows us to direct children and their families to the best resources faster. During a single visit, a family is able to meet with several specialists and undergo tests, which are immediately sent to a centralized biobank.
The results speak for themselves: in the last two years, wait times plummeted from 15 months to two weeks, and children were referred to the appropriate specialists in 100% of cases.
As a result of your generosity, an ever-growing number of children in Quebec with neurodevelopmental disorders are reaching their full potential, which is allowing them to flourish and build their adult lives.
Accelerating the pace of autism research
We still have a very limited understanding of autism spectrum disorders (ASD). Moreover, they exist in various forms and are often combined with other conditions. Manifestations of ASD, such as difficulty in communication and social interaction or restricted and repetitive patterns of behaviour, often present a puzzle that is as perplexing for physicians as it is for parents.
Because you chose to be part of our Healing More Better campaign, in 2017, the CHU Sainte-Justine was able to recruit Dr. Sébastien Jacquemont and Professor Marc Lanovaz, two star researchers specialized in autism spectrum disorders.
Dr. Jacquemont directs the Canada Research Chair in Genetics of Neurodevelopmental Disorders and Associated Dysregulation in Energy Balance. His work focuses on the genetic variations involved in autism spectrum disorders, in collaboration with the Montreal Neurological Institute (the “Neuro”), the Douglas Institute, the McGill University Health Centre (MUHC), the Hôpital Rivière-des-Prairies and the CHU Sainte-Justine.
Marc Lanovaz is a professor of psychoeducation specializing in behavioural therapy to improve the quality of life of children with an ASD. He is one of the rare Canadian researchers to have developed an expertise in the formal evaluation of behavioural therapy. He has validated several interventions that have improved the quality of life of these children and their families.
CIRENE: Supporting autism research
To gain a better understanding of autism spectrum disorders requires us to study large cohorts of children with well-defined characteristics. Having access to CIRENE’s vast databank allows researchers to more rapidly constitute these cohorts. It is a research tool of inestimable value!
Detection of mental illness in adolescents
Dr. Patricia Conrod, a clinical psychologist at the CHU Sainte-Justine and a researcher with the research unit on children’s psychosocial maladjustment, directs the program for early detection and treatment of mental illness in schools, based on a proven model that has achieved very good results in a number of countries.
The aim of the program is to detect and treat mental illness in 12- to 18-year-olds in their daily environment. In 70% of cases, mental illnesses develop in young people during adolescence, a highly vulnerable period.
So far, the program has been rolled out in close to 20 high schools, reaching several thousand students in the Greater Montreal area. It is making it possible to identify students who present vulnerability factors and develop a treatment plan in collaboration with specialists within their school community. The program also seeks to set up a support centre for families and create a platform that consolidates the knowledge generated by Quebec and Canadian mental health professionals. It is an invaluable tool that allows health professionals to share their knowledge, better support families and provide Canada-wide training.
As a result of your support, we are able to take full advantage of our resources, and ensure that a large number of young people between the ages of 12 and 18 experiencing upheavals in their lives receive the proper attention, which will have a positive effect on their mental and psychosocial development over the long term.
Experiencing a psychotic episode or having to undergo emergency psychiatric treatment is traumatic and destabilizing—especially when you’re 14 or 15 years old! After such an ordeal, you need to recover and stay on top of things to avoid a relapse. Espace Transition is an initiative that, for the last four years, has provided young people, hospital professionals and families with the tools to support a gradual and smooth return to “normal” life.
Espace Transition was born of a singular doctoral thesis whose primary focus was youth and the combined expressive and liberating potential of the arts with the socializing power of group projects. Groups of 15 to 20 people, made up of teenagers—whether patients or not—psychoeducators and artists, work together for several weeks to put on a show, while never knowing anyone’s status!
The effectiveness of these artistic activities in combating stigma and rebuilding self-confidence lies in the fact that social labelling disappears in a “safe” environment created by specialists taking part incognito. The results are exceeding expectations!
Launched in 2007 with a series of theatre and circus projects, today, Espace Transition organizes music and art workshops in partnership with Jeunesses Musicales du Canada and the Montreal Museum of Fine Arts.
Thanks to you, we can offer these workshops for free. The artists taking part in the program use materials adapted to the needs of participants, and they’ll soon be moving to their own premises!
Espace Transition was a huge hit at scientific conferences held in Paris, New York, Berlin and Yokohama. Such was its success that we are hoping one day to be able to expand it throughout the province!