2025 Frank Gavin Patient Engagement Leadership Awards

Submit your nominations!

Open to members and non-members of CHILD-BRIGHT 

The CHILD-BRIGHT Network is proud to launch the fourth iteration of the Frank Gavin Patient Engagement Leadership Awards, which recognize the exceptional leadership of partners with lived and living experience (PWLEs) in Canadian pediatric brain-based disability research.

Established in 2021, the awards were named in honour of Frank Gavin, our former Director of Engagement, for his vital contributions to the network’s impressive growth as an entity of the Strategy for Patient-Oriented Research (SPOR).

In this fourth iteration, we will be granting a Frank Gavin award to two PWLEs: 1) a youth or former pediatric patient with lived and living experience of a brain-based developmental disability and 2) a parent, caregiver, or family member of a child with lived and living experience of a brain-based developmental disability.

Do you know a PWLE with considerable experience participating in patient-oriented research and a proven track record of research engagement leadership? Would you like to put your own name forward? We’re accepting nominations as of today!  

Nominations are due by March 21, 2025

Visit the competition page for all the details, including the eligibility requirements and application guidelines. Note that members as well as non-members of the CHILD-BRIGHT Network are eligible for these awards.

Good luck!

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. 

The National Youth Advocacy Council welcomes three new members

The National Youth Advocacy Council (NYAC) is responsible for advising CHILD-BRIGHT-funded projects on optimizing youth engagement activities. Composed of Canadian youth members with lived and living experience of a brain-based developmental disability, the members are available to inform research development, from the generation of questions to the dissemination of results, throughout the CHILD-BRIGHT Network and beyond. 

We’re delighted to introduce the NYAC’s three newest members: Keenan Brignall, Kat Jeremiah, and Phoenix Lowe. Read on to learn more about them! 

Meet our newest NYAC members:  

Keenan Brignall

Keenan is an autistic person from Calgary, Alberta. He is a movie buff and is currently enrolled in Film and Video Production at the Southern Alberta Institute of Technology (SAIT). 

Keenan loves history and science-fiction, especially stories involving robots. He’s also interested in military aviation and dreams of one day making a movie about it. He’s passionate about music and sound production

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Kat Jeremiah

Kat is from Timmins, Ontario, and a proud member of the Missanabie Cree First Nation. Kat has autism and attention-deficit/hyperactivity disorder (ADHD).  

Kat is passionate about youth advocacy, creativity, and community engagement. Serving on multiple youth councils, including the NYAC, they strive to empower and support young people facing challenges similar to their own. With interests in quilting, painting, photography, and reading, Kat brings a creative and empathetic perspective to raising awareness, fostering inclusion, and creating positive change for youth and their communities. 

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Phoenix Lowe

Phoenix is in her last year of high school in rural New Brunswick. She plans to pursue a Bachelor of Social Work in the fall, with the hope of studying the intersection of mental health bias and neurological health outcomes. 

Phoenix is excited to be joining the NYAC and share her experiences living with Tourette’s syndrome and other brain-based developmental disabilities. She’s thrilled to be able to support researchers in strengthening youth engagement. 

Are you interested in learning more about our youth research partners and their mandate? Learn more, including how you can request their consultations services for your research project:

Meet the youth with lived & living experience shaping CHILD-BRIGHT's research

CHILD-BRIGHT's National Youth Advocacy Council, or NYAC, is composed of research partners under 30 living with brain-based developmental disabilities. 

They’re helping to move the needle on doing research with (not just for) people with lived and living experience of disability. We’ve dubbed them our Lived & Living Experience Leaders!

This spring and summer, we highlighted their pivotal work at CHILD-BRIGHT as consultants and co-researchers in a LinkedIn-exclusive series. Now, you can read all 10 profiles here!

“[Self-advocacy] is about being vocal and creating representation for people with disabilities.”

— Logan

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“I’d like to see more youth with disabilities taking the lead on research projects.”

— Mathias

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“When it comes to health research, marginalized groups need to be included in the conversation.”

— Kelsey

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“[Being part of the NYAC has] helped me a lot. I have people I can talk to.”

— Jacob

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“Even though I’ve spent a lot of time studying neurotypical social interactions, it can be hard. I don’t always understand ironic jokes or innuendos. It’s a daily challenge.”

— Hans

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“We live in a world that doesn’t always give people like me the opportunity to speak for themselves.”

— Gillian

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“You wouldn’t create a product without consulting with consumers. We’ve been making these research products that didn’t involve the end users.”

— Claire

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“I think it’s important to look at brain and mental health using an intersectional lens.”

— Shafniya

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“Being unapologetically myself allows other marginalized people to identify me as a safe person, which means I can help advocate on their behalf.”

— Tommy

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“I’ve embraced my autistic traits. In embracing them, I’m able to be a better self-advocate.”

— Sierra

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Child health researchers can engage the NYAC as part of CHILD-BRIGHT’s Lived and Living Experience Consultation Service. Learn more and submit a request for consultation on your research project:

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!   

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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.