KBHN and CHILD-BRIGHT team up to strengthen youth engagement in research

The CHILD-BRIGHT Network and Kids Brain Health Network (KBHN) are teaming up to support youth engagement in brain-based developmental disability research! 

Effective as of January 2025, this partnership will allow KBHN-funded researchers and project teams to enhance their research and policy initiatives through consultation with CHILD-BRIGHT’s National Youth Advocacy Council (NYAC). In turn, CHILD-BRIGHT’s youth research partners will engage in meaningful consultations and collaborations that will foster valuable skill-building, experiential, and networking opportunities. 

What is the CHILD-BRIGHT National Youth Advocacy Council? 

The CHILD-BRIGHT Network is a pan-Canadian patient-oriented research (POR) network based at the Research Institute of the McGill University Health Centre. Created in 2016, it works to create brighter futures for children and youth with brain-based developmental disabilities and their families. As part of this mandate, CHILD-BRIGHT has developed authentic, meaningful relationships with youth research partners. As members of our NYAC, these individuals play a crucial role in multiple areas of the network’s research. They assist in developing research protocols and participant recruitment strategies, review and contribute to publications, and participate in implementation science and knowledge mobilization activities.   

NYAC members at the 2023 CHILD-BRIGHT Conference

The NYAC is now a well-established body with robust participation from a dedicated group of youth research partners across Canada. These youths have diverse lived and living experiences of brain-based developmental disabilities and different health concerns in their provinces, and they are committed to supporting research on disabilities.  

“This partnership between KBHN and CHILD-BRIGHT will open doors for everyone on the NYAC and within the respective networks to collaborate and network with one another. Most importantly, this partnership will play a significant part in the sustainability of both networks and in keeping our shared goal of advancing the field of patient-oriented research and youth engagement alive for years to come,” shared Logan Wong, NYAC Co-Chair.  

“We are very excited to collaborate with KBHN. It will be a great opportunity to allow this council of youth and young people to have their say on patient-research research across Canada," added fellow Co-Chair Hans Dupuis. 

 
KBHN and CHILD-BRIGHT: Building on existing successes 

KBHN is a Canada-wide network that spreads, scales and implements proven solutions for children with neurodevelopmental disabilities and their families. Since 2009, KBHN has partnered with communities, industries, governments and not-for-profit organizations to improve early identification of neurodevelopmental disabilities, effective interventions and treatments, and family support. KBHN’s vision is for all children to enjoy a good quality of life, participate in every aspect of society, and reach their full potential. 

“Partnering with CHILD-BRIGHT through the NYAC is a significant step in ensuring that youth are consulted in research projects that directly affect them,” said KBHN Chief Scientist Dr. Jennifer Zwicker. “KBHN’s focus has shifted into implementing proven solutions for children and youth with neurodevelopmental disabilities, and it’s important that we collaborate closely with the NYAC in this mission.” 

KBHN and CHILD-BRIGHT have an existing track record of successful youth engagement collaborations. In 2022, three NYAC members presented on youth engagement in research as part of the KBHN PART Training Series: A Conversation About Youth Engagement in Research. They shared general engagement strategies, practical examples around accessibility and accommodations, and helpful tips/resources when working with youth. In 2023, one NYAC member participated as a panelist on the Youth Engagement Panel for KBHN trainees, to share their experiences in research. 

Why grow youth engagement in patient-oriented research?  

Both the CHILD-BRIGHT and KBHN recognize the value of youth perspectives in shaping effective research and policy.  

“Engaging children and youth with lived and living experience of brain-based disability is essential to ensuring the relevance, and increasing the impact of, childhood disability research.”

— Jenny Gilbert, CHILD-BRIGHT Director of Engagement

“Engaging children and youth with lived and living experience of brain-based disability is essential to ensuring the relevance, and increasing the impact of, childhood disability research,” emphasized Jenny Gilbert, CHILD-BRIGHT Director of Engagement. “Children and youth offer unique insights that can lead to more effective and personalized health care solutions. Their lived and living experiences can highlight gaps in current research and practice that might otherwise be overlooked.”  

Youth engagement in research can influence policy and practice, ensuring that health care systems are more inclusive and responsive to the needs of children and youth with brain-based developmental disabilities and their families. This can lead to systemic changes that benefit not only the individuals involved, but also the broader community. 

Overall, the partnership will contribute to more effective and inclusive research and policy outcomes aimed at improving the quality of health care for children and youth with brain-based developmental disabilities. 

Moving from stigma to radical love for mental health & brain-based disability: one mother’s story

By Samadhi Mora Severino 

CHILD-BRIGHT parent research partner and equity, diversity, and inclusion (EDI) Advisor Samadhi Mora Severino sheds light on her experiences with bipolar disorder while supporting one child with severe cerebral palsy and another with ADHD and a learning disability. Stories like Samadhi’s highlight how mental health and disability are intrinsic parts of the human experience and do not diminish anyone’s value or impact.  

Samadhi Mora Severino

My name is Samadhi, and I am an immigrant settler living in Toronto, Canada. I was born in, and am Indigenous to, Venezuela. I am also the mother of two children, who both live with brain-based developmental disabilities. My older son, Ethan, is 14 years old and has attention deficit hyperactivity disorder (ADHD) and a learning disability, while my younger son, Kian, is 12 and has severe cerebral palsy and intellectual disability. I have been involved with CHILD-BRIGHT as a parent research partner since 2016 and more recently as an EDI Advisor. I am also a PhD student in Health Policy and Equity, holding a master's degree in Critical Disability Studies, and two undergraduate degrees in Philosophy (specializing in bioethics and applied ethics) and Anthropology (focusing on medical anthropology – Indigenous Health and Disability Rights). 

Alongside these academic pursuits, I live with a learning disability, ADHD, and a mental health diagnosis. In 2022, I was diagnosed with mild bipolar disorder 1, which became part of my journey as a mother of children with complex needs. Navigating life with a mental health diagnosis while raising children with brain-based developmental disabilities has been both challenging and empowering. This experience has deepened my understanding of the stigma that people living with mental health diagnosis, like bipolar disorder, often face. It has also shaped my advocacy and fueled my passion for creating more inclusive spaces for those with disabilities, mental health diagnoses, and/or Indigenous, Black, and equity-seeking identities. 

First encounters with the mental health system 

My first encounter with the mental health care system occurred in 2020, when I began seeing my incredible psychiatrist. Mental health care in Canada is complex and underfunded, and I have navigated the system in both British Columbia and Ontario. I am deeply privileged to have access to a psychiatrist—something not everyone is afforded. I am even more fortunate that my psychiatrist is trauma informed, open to learning and unlearning, and works collaboratively with me to ensure I receive the best care possible.  

I was diagnosed with mild bipolar disorder 1, a mood disorder, in 2022. Navigating life with bipolar has not been easy; there is still a lot of stigma surrounding such a diagnosis. Before my diagnosis, I did not fully understand what bipolar disorder was. When I first heard the diagnosis, I struggled with shame and embarrassment. Mental health diagnoses like anxiety or depression are often more socially acceptable, but other conditions, including bipolar disorder, borderline personality disorder, and schizophrenia, are met with less empathy.  

Following this diagnosis, I had to grieve the person I once was and adjust to the person I had become, all while working through my own internalized sanism. (Sanism refers to the discriminatory beliefs, actions, and policies that dehumanize people with mental health diagnoses.) Thankfully, I have received unwavering support, love, care from my mom and dad and my children.  

After three years, I no longer feel ashamed to talk about being bipolar. I have grown to love and accept the person I am now with this diagnosis. I look back on all I have accomplished—being a mother, a parent research partner, an emerging researcher, an EDI Advisor, a friend, a daughter, and a human being. I remind myself that having bipolar does not define me; it is simply one aspect of who I am. 

Entering the world of parenting 

Ethan (left) and Kian

In 2009, before my son Ethan was born, our family’s geneticist told me that the hardest part of raising a child with a disability is how society perceives disability and the lack of government services to support families. Ethan had shown soft markers on his ultrasound that suggested he might be born with medical complexities or severe disabilities, but he was not. He was eventually diagnosed with ADHD and a learning disability. 

I never forgot that conversation with our geneticist, or the compassion and empathy he showed us. This sentiment resurfaced when my younger son, Kian, was diagnosed with severe cerebral palsy on March 3, 2015. I will always remember that day, as it also marked the return of Kian’s genetic exome sequencing, leading to a second diagnosis of osteopathia striata with cranial sclerosis, a genetic disorder that affects bone development. It can also cause neurological conditions and hearing loss. 

I did not truly understand what it meant to care for someone with severe physical disabilities until Kian was born. Parenting a child with severe disabilities is different from parenting a child with other disabilities or a child without a disability. Kian cannot independently carry out his activities of daily living; he requires assistance with everything from bathing and eating to dressing. He cannot sit, stand or walk. He uses a powerchair. He is a high user of health and social services which translates to many therapy and medical appointments.  

Kian

Kian is also incredibly skilled with technology, funny, mischievous, and full of an adventurous spirit. He has an immense sense of empathy that I have rarely encountered in others. When I was diagnosed with bipolar disorder, I began to reflect on the stigma I was facing and internalizing, and how Kian’s daily experiences contrast with mine. I can mask my bipolar disorder, but Kian cannot hide his physical disability. At the same time, the assumptions people make about Kian, and the assumptions made about those with bipolar disorder, are disheartening. In that way, we share a profound connection. 

As I think about Kian's future, I wonder how society will treat him as he grows older. The public’s empathy seems to shift dramatically when it comes to disabilities. While there is often more compassion for children, this empathy can lessen as someone reaches adulthood. 

I always advocate with Kian in medical, educational, and social settings, prioritizing his voice and respecting his dignity, autonomy, and rights as outlined in the Declaration on the Rights of Disabled Persons and the Convention on the Rights of Persons with Disabilities. Over time, I have had to let go of my initial helicopter-parenting tendencies and allow Kian to live authentically, just as any child should. I remember one moment during a charity walk when Kian, at just four years old, wanted to tackle a steep hill in his power wheelchair. Initially, I hesitated, unsure if I should let him go. But I quickly reminded myself: If Kian were a typical four-year-old, would I have hesitated? Of course not. So, I let him go up the hill with his nurse. He had the time of his life, and the smile he wore that day is one I will never forget. 

Looking back on that conversation I had in 2009 with our geneticist, I now see the truth in his words. The issue was never Kian; it was how the world saw him—or, more accurately, how it did not see him. Society, research, policies, and clinical guidelines do not always consider him in the way I did and the way Kian sees himself. This realization fueled my desire to participate in advocacy and research, pushing for improvements in health equity with Kian and others like him in Canada. It also led me to understand the importance of recognizing neurodivergence to create better support systems with children with disabilities and their families.  

Fostering radical love in neurodevelopmental research 

In All About Love, Black Critical Race Theorist scholar bell hooks discussed love as a combination of six ingredients: care, commitment, knowledge, responsibility, respect, and trust. She argued that love is crucial to social justice, and that radical love can unite us all, bridging social movements and advancing our collective progress.  

In disability research, radical love can look like creating spaces where people can come together, feel safe, and express their authentic selves. Love can mean ensuring that our research outputs to the public are in plain language, making the findings clear, concise, and accessible to all. Love can mean that accommodation requests can be met without judgment and with support, care, and love. Love can mean working to understand, instead of reinforcing the stigma of having a mental health diagnosis. 

My diverse lived experiences have deeply shaped my academic and professional journey, inspiring me to pursue meaningful research that bridges my personal and professional worlds. My PhD research focuses on the intersections of race and disability, specifically examining the experiences of BIPOC (Black, Indigenous, and people of colour) families with mental health diagnoses and their children with disabilities in the child welfare system. Guided by the Indigenous conceptual framework of Margaret Kovach, an Indigenous scholar of Nêhiyaw and Saulteaux ancestry from Treaty 4 and member of Pasqua First Nation, I draw on Indigenous epistemology, ethics, community, and the experiencing self in relationships. 

“Every project I have been part of—whether as a CHILD-BRIGHT research partner or an emerging researcher—has profoundly changed me. ”

— Samadhi Mora Severino

I believe research should transform not only the communities it serves but also the researcher. As Shawn Wilson, who is Opaskwayak Cree from northern Manitoba, aptly states in Research is Ceremony: “If research does not change you as a person, then you haven’t done it right.” Every project I have been part of—whether as a CHILD-BRIGHT research partner or an emerging researcher—has profoundly changed me. These experiences have fueled my advocacy with families and youth with neurodevelopmental disabilities, encouraging me to reimagine how research, policy, and practice can serve communities with radical love, empathy, and integrity. 

At the core of my work is a commitment to radical love. My hope is that one day, society will no longer require people with disabilities and people with mental health diagnoses to prove their worth. Instead, they will be accepted for their authentic selves, free from the barriers of discriminatory research, clinical guidelines, policies, and laws. 

Call to action 

Here are steps we can all take to foster a more inclusive world: 

1. Embrace inclusion with genuine love. Approach accommodations and accessibility with an open heart. 

2. Commit to continuous learning. Be willing to unlearn harmful misinformation and embrace new, sometimes uncomfortable truths. 

3. Avoid assumptions. Recognize that diagnoses vary widely, and there is no one-size-fits-all approach to understanding or supporting individuals. 

4. Take accountability. Acknowledge mistakes, learn from them, and commit to growing together. 

5. Respect the autonomy and dignity of people with mental health diagnoses. They can lead fulfilling lives and contribute meaningfully across many roles through society respecting their autonomy and dignity and ending the stigma. 

6. Advocate for anti-discriminatory practices. Develop inclusive research, policies, and clinical guidelines that actively involve and centre the voices of those with lived and living experiences. 

I invite you to reflect on how you can contribute to creating a world where inclusion, equity, and radical love are not ideals but everyday practices. Together, we can reimagine a society where everyone is empowered to live authentically and contribute meaningfully.  

Meet CHILD-BRIGHT’s new Director of Operations

CHILD-BRIGHT is pleased to welcome Tom Philpott MBA, MHA, CHE to the network as our new Director of Operations! 

As Director of Operations, Tom oversees all management, business, and administrative processes and procedures for CHILD-BRIGHT activities, including for the five network programs. He contributes to program development and guides performance monitoring and reporting of all network activities while ensuring the timely and high-quality delivery of all CHILD-BRIGHT goals and administrative milestones. 

Tom has over 25 years of health research and innovation experience spanning the public and private sectors, including health care delivery, academic research, and health tech R&D. He was awarded a B.A. from McGill University in Political Science and History, an MBA from Ivey Business School (Western University), and a Master of Health Administration from the Telfer School of Management (University of Ottawa).  

Tom is no stranger to the McGill University Health Centre (MUHC), whose Research Institute houses CHILD-BRIGHT’s head office. He began his health care career at the MUHC in 2005, eventually becoming executive director of Community for Excellence in Health Governance, based at the MUHC, which had an international impact on the quality of care in large health systems and long-term care facilities. Tom also served as executive director for Kids Brain Health Network, hosted at the University of British Columbia, a national ecosystem of centres of excellence addressing neurodevelopmental disorders. Immediately prior to CHILD-BRIGHT, Tom was working as COO for Circle Innovation, a Simon Fraser University-affiliated non-profit assisting health tech entrepreneurs develop innovative products for the marketplace using a unique co-creation model. 

Other career highlights include contributing to the launch of the international branch of the McGill University Health Centre, leading strategic priority implementation and change management at a large health authority undergoing a merger in Nova Scotia, and helping plan a new research centre for Providence Health Care in British Columbia. In his personal time, Tom volunteers in admissions for McGill University’s Faculty of Medicine, is kept busy as an active dad with his family, and regularly practices meditation.  

Welcome, Tom! 

CHILD-BRIGHT wishes to thank former Director of Operations Lorraine Reynolds, who brought her wealth of administration experience to CHILD-BRIGHT in 2019 and quickly proved to be a dedicated, astute, and skillful Director. She steered the network through the COVID-19 pandemic and oversaw the organization of the network’s first ever hybrid conference in 2023.  

We are also grateful for the tireless efforts of our interim Directors of Operations, Christine Marcotte and Pierre Zwiegers, which proved crucial to navigating the transition.  

Announcing CHILD-BRIGHT’s new Director of Engagement

The CHILD-BRIGHT Network is thrilled to introduce our new Director of Engagement, Jenny Gilbert! 

Our Engagement Program focuses on authentic involvement of research partners with lived and living experience (PWLEs) in all facets of CHILD-BRIGHT's work. As Director of Engagement, Jenny will lead the program, working closely with the Engagement Program and Projects Manager and the Youth and Engagement Initiative Coordinator to strengthen engagement across the entire portfolio of network activities (implementation science research; training and capacity building; knowledge mobilization; equity, diversity, inclusion, decolonization and Indigenization; and communications).  

Jenny brings two decades of experience working in engagement, research, and knowledge mobilization in the public and nonprofit sectors to the role, including for the Ontario Midwives Association, Ontario Health/Health Quality Ontario, and the Ontario College of Family Physicians. She has also collaborated extensively with pan-Canadian networks in engagement. As such, a strong focus of Jenny’s career has been elevating the voices of people with lived experience to address inequities. In her early career, Jenny worked with children and families experiencing the impacts of colonialism, racism, and poverty in a Head Start Program on a reserve on the West Coast, and later, in Toronto with teen moms experiencing homelessness. For the past eight years, she has been a member of the Toronto Birth Centre's Quality Advisory Committee, representing lived experience and community perspectives. 

“Illustrating the story—the lived experiences—behind data is a strong passion of mine,” Jenny shares. “Listening, empathy, and curiosity—these are at the core of who I am and what I do. I approach my work from a place of humility, trust, and respect using a reflexive, intersectional lens—to get to the heart of insights and achieve outcomes that are aligned with individual, community, or organizational goals, needs, and values. I’m enthusiastic about joining CHILD-BRIGHT in this work to integrate diverse perspectives, experiences, and evidence into meaningful, action-oriented solutions for improved health outcomes for kids with brain-based disabilities.” 

“Listening, empathy, and curiosity—these are at the core of who I am and what I do.”

— Jenny Gilbert

Jenny is a parent of kids with brain-based developmental disabilities and is also the oldest of 16 kids: 12 of her siblings were adopted through the foster care system, have disabilities such as autism, fetal alcohol spectrum disorder, and learning disabilities, and experienced significant early childhood trauma. The varied experiences of her children and her siblings illustrate to her the importance of integrating perspectives of people with lived experience into research to support our understanding of the broader forces and systems that represent barriers or enablers to health, well-being, and full participation in our communities. They also illustrate how advocacy and policy change can lead to more relevant, impactful health policy, program, and service design and improve outcomes for kids and families. 

Working in the engagement sector, as well as parenting a child with autism and a rare autoimmune disease and two with attention-deficit/hyperactivity disorder, has afforded her a deep understanding of how asking parents, caregivers, and people with lived experience of brain-based developmental disabilities to contribute to research and volunteer their time can sometimes be more than they are willing or able to take on. In her view, it is essential to create engagement opportunities that consider the needs of the community and offer multiple entry–points and variable time commitments, and feel meaningful, reciprocal, and impactful to all involved. 

“So often in our work we are asked to separate our personal lives from our professional ones, so what excites me most about joining CHILD-BRIGHT is being able to bring together my experience as a parent of children with brain-based developmental disabilities with my decade-plus career in the health system facilitating engagement with people with lived experiences and building organizational capacity for inclusive engagement,” says Jenny. 

Welcome, Jenny!   

*** 

CHILD-BRIGHT wishes to thank outgoing Director of Engagement Sharon McCarry, who led the Engagement Program from 2021 to 2024. A passionate advocate for children and families with lived and living experience of autism spectrum disorder, Sharon championed our PWLEs throughout her tenure and increased the diversity of PWLEs who are involved in our network’s activities.  

We are also grateful for the support of CHILD-BRIGHT’s Parent Liaison and interim Director of Engagement Carrie Costello. Carrie offered essential guidance at a critical time for the Engagement Program, leading the Engagement Council with compassion and creating space for our members to authentically participate. 

Announcing the recipients of the 2024 Frank Gavin Patient Engagement Awards

We are pleased to announce the recipients of the 2024 Frank Gavin Patient Engagement Leadership Awards, established in honour of CHILD-BRIGHT's first Director of the Engagement Program.  

This year, we are thrilled to recognize two partners with lived and living experience (PWLEs) for their leadership in engagement in research related to brain-based developmental disabilities in children and youth: 

• Mohammed Merchant  

• Claire Dawe-McCord  

Learn more about Mohammed and Claire: 

Parent research partner recipient: Mohammed Merchant 

A dedicated research partner and outspoken patient advocate, Mohammed first joined CHILD-BRIGHT as part of the Phase 1 research project, MATernal hyperoxygenation in Congenital Heart Disease (MATCH), which evaluated whether supplementing mothers with oxygen helps brain development in babies with congenital heart disease (CHD). 

As a parent research partner, Mohammed was instrumental in developing interactive educational materials for the study and creating ways for PWLEs to connect and support one another (such as through a support group). His contributions showcase how having PWLEs on a research team can positively impact the study approach.  

Mohammed’s feedback also supported the research team in the development of its Phase 2 study, Care Pathways for the Developmental Follow-up of Children with CHD. 

Mohammed stands out as a leader in patient-oriented research forums, regularly speaking at conferences and engaging with patient support groups. His passion for improving health care outcomes is evident in his work, and we are pleased to be able to recognize his contributions in this way. 

Youth research partner recipient: Claire Dawe-McCord 

Claire’s patient-oriented research journey began at age 13, when she took part in the CHEO Youth Forum. She became a champion for youth engagement in health care research and went on to co-chair the development of Kids Come First, Ontario's only pediatric Ontario Health Team. Claire has contributed her perspective to the Ministries of Health and Long-Term Care in Ontario, the CHEO Research Institute’s Patient and Family Advisory Committee, and CanChild. 

As a youth research partner with CHILD-BRIGHT's READYorNot™ Brain-Based Disabilities Project, she helped the team develop and study an e-health app to help youth and families take charge of the transition from pediatric to adult health care. Her undergraduate thesis also explored this transition. 

As a current member of the network’s National Youth Advocacy Council, Claire consults with childhood disability research projects to optimize their youth engagement activities. 

Now a medical student at the Cumming School of Medicine at the University of Calgary, Claire continues to mentor youth who are new to patient-oriented research. We are pleased to recognize her leadership in patient-centered approaches to research and health care delivery. 

Mohammed will receive a registration and travel allowance of up to $800 for a conference of his choice in Canada or the United States.  As the youth recipient, Claire will receive up to $800 to either attend a patient-oriented research training event, or to support a patient-oriented research project of her choice. 

Congratulations, Mohammed and Claire!