Announcing the recipients of the 2025 Frank Gavin Patient Engagement Awards

We are pleased to announce the recipients of the 2025 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:  

• Gunjan Seth 

• Henry Stewart 

Learn more about them: 

Parent research partner recipient: Gunjan Seth

Gunjan Seth has been involved with CHILD-BRIGHT's Engagement Council since 2022 and is also a member of the Training & Capacity Building team, the Knowledge Mobilization Family Hub, and the CHILD-BRIGHT VR-EF research project. She is actively engaged with multiple institutions and organizations, including ECHO Autism Ontario, Autism Speaks Autism Care Network, IMPaCT Trials, and Ontario Health. 

In addition to Gunjan readily sharing her own experiences as a parent of a child with autism and attention deficit and hyperactivity disorder in order to steer innovation and action, she advocates for all families who are navigating similar complex journeys. She is a passionate advocate for equity, diversity, and the meaningful inclusion of patients in their own care. She is the co-author of a chapter titled “The Power of Compassion and Gratitude” in the book Coaching for Person-Centred Healthcare: A Solution-Focused Approach to Collaborative Care. 

The CHILD-BRIGHT Network is pleased to recognize her dedication to health care outcomes for families and championing equity, diversity, and inclusion.

Youth research partner recipient: Henry Stewart

A Grade 12 student, Henry Stewart has already made important contributions to patient-oriented research despite his young age! Henry’s commitment to amplifying youth voices in health care decisions is clear: he is a member of the CIHR-IDHCYH’s Youth Advisory Council, as well as a long-standing youth advisory council member and youth panelist for the Sport Injury Prevention Research Centre at the University of Calgary; a co-chair of the Alberta Children’s Hospital Youth Council; and co-chair of the Child and Youth Advisory Council.  

Henry has championed a patient-centered approach to engagement in research at the Pediatric Onset of Neuromotor Impairments (PONI) lab. He has also volunteered with the AHS Teens Talk Transition program, supporting other youths in transitioning from pediatric to adult health care.  

The CHILD-BRIGHT Network is proud to recognize Henry’s leadership as a youth research partner.

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

Congratulations, Gunjan and Henry, and thank you to all who took the time to submit nominations and applications for consideration. It is heartening to see the strength and breadth of leadership in engagement across the patient-oriented research community.

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: