Carrie Costello receives the 2023 Frank Gavin Patient Engagement Leadership Award

In June 2023, one of our dearly valued network members, Carrie Costello, was selected as the recipient of our Frank Gavin Patient Engagement Leadership Award. Established in honour of CHILD-BRIGHT's first Director of the Citizen Engagement Program, the award recognizes patient engagement leaders in research related to children and youth with brain-based developmental disabilities. 

About Carrie

Frank Gavin (left), Carrie Costello (centre), and Sharon McCarry (right).

As we considered candidates for the Frank Gavin award, Carrie repeatedly stood out for her unrivalled passion, tireless advocacy work, and seemingly limitless energy. “It is indeed rare that a person assumes a role that is immediately recognizable as a role they were born to do,” wrote one enthusiastic individual in their letter of support. “Carrie is one of these people.” 

In their statements, Carrie’s nominators described her as someone with natural intuition and compassion, and an inspiring ability to connect with diverse audiences within the health care and education systems. 

Like many of the network’s lived experience partners, Carrie had no formal background in research when she joined the CHILD-BRIGHT family. After graduating with a Bachelor of Fine Arts from the University of Victoria, she became an award-winning playwright for young audiences, a skilled puppeteer, and a sought-after educator. Carrie also became a proud mother of three. In 2016, it was pure chance that led her to CHILD-BRIGHT: “One of the network’s research teams put out a call for parents with lived experience,” says Carrie, whose middle daughter has an intellectual disability and a seizure disorder. “The project looked really interesting, and so I answered it!” 

Carrie, based in Manitoba, joined the Parent Advisory Committee for the BRIGHT Coaching study, which created and tested a coaching program for families of preschoolers with suspected developmental delays in four provinces. Carrie had a strong voice from the start, and her valuable insights and contributions shaped the program’s content and materials. “The move to support families in a research setting didn’t feel strange at all,” recalls Carrie. “And I love to continually learn. Similar to theatre, each new project brings me new opportunities to learn and meet new people.”

In 2019, Carrie became CHILD-BRIGHT's Parent Liaison, working directly with other parents of children with brain-based developmental disabilities involved in different research projects and committees, and acting as their link to the CHILD-BRIGHT Citizen Engagement Council. When the BRIGHT Coaching project transitioned to its second phase, Carrie was invited to be one of the six co-principal investigators (co-PIs)—a move that testifies to her growing expertise and influence in the brain-based developmental disability community. 

A natural leader

Carrie and her daughter.

When asked what winning the Frank Gavin award meant to her, Carrie is candid. “Honestly, this award came at a moment I really needed it. I was losing hope that the work I was doing made any difference. Receiving this recognition from so many people I value and respect is a great honour.” 

Since 2019, Carrie has supported the patient-oriented research work of 12 CHILD-BRIGHT Phase 1 research projects and continues to offer support in Phase 2. She’s also serving as the Vice-Chair of the CHILD-BRIGHT Citizen Engagement Council, welcoming new members of the brain-based disability community to the network. What’s more, she publishes widely in academic journals and the lay press. “Although she has been formally involved in research only since spring 2021, her list of accomplishments demonstrates a lifetime commitment to patient engagement,” wrote one of Carrie’s award nominators. 

All who have met and had the pleasure of working with Carrie agree that her impact on the patient-oriented research community has, and continues to be, profound. She is a natural leader, teacher, advocate, and collaborator. We can think of no person more deserving of this award. On behalf of everyone at CHILD-BRIGHT, we’d like to extend our heartfelt congratulations to Carrie! We’re thrilled to be able to celebrate your many achievements.

In 2024, we will be widening the scope of the Frank Gavin award: Eligible CHILD-BRIGHT candidates will include adults as well as youth with lived experience involved in brain-based developmental disability research. Look out for our call for nominations in the new year! 

Donna Thomson selected as first recipient of Frank Gavin Patient Engagement Leadership Award

The CHILD-BRIGHT Network is delighted to announce that Donna Thomson has been selected as the first recipient of the Frank Gavin Patient Engagement Leadership Award!

The prize, launched in September 2021, honours Frank Gavin, CHILD-BRIGHT's first Director of the Citizen Engagement Program. It also recognizes patient engagement leaders in research related to children and youth with brain-based developmental disabilities.

About Donna

Donna was selected for her many years of exemplary leadership and active participation in patient-oriented research. She has been working in partnership with CHILD-BRIGHT since its inception in 2016.

As a mom to Nick, who was born with severe cerebral palsy, Donna is a tireless advocate for children and youth with brain-based developmental disabilities and their families in research. Donna has been a parent partner on numerous research studies within CHILD-BRIGHT and beyond, including as part of Strongest Families Neurodevelopmental Program (Strongest Families ND)’s Parent Advisory Committee, the Life Beyond Trauma Program, and READYorNot™ Brain-Based Disabilities Program’s Family Advisory Council. She has also co-authored published papers on these studies and co-presented webinars and rounds with principal investigators at national and international conferences.

She was also a long-serving member of CHILD-BRIGHT's Citizen Engagement Council (CEC) and Network Steering Committee (NSC). As a CEC member, she contributed to the development of our What’s My Why? blog series and shared her own story. In partnership with another patient-partner, Donna also proposed the concept for the My COVID Disability Q social media campaign, which invited youth and their families to ask questions related to disability and COVID-19 and get credible answers from Canada’s leading disability experts. In 2020, she co-authored CHILD-BRIGHT’s rapid review of COVID-19 and children with brain-based developmental disabilities. Alongside several other CHILD-BRIGHT members, she also co-authored Time to be Counted: COVID-19 and Intellectual and Developmental Disabilities, a policy brief published by the Royal Society of Canada.

Outside of CHILD-BRIGHT, Donna has served as director and co-chair on the Board of Directors of the Kids Brain Health Network (KBHN). In addition, she is a co-designer and co-instructor of the  Family Engagement in Research Certificate Program and the upcoming Leadership Academy at  CanChild, both funded by KBHN in partnership with McMaster Continuing Education.

Donna Thomson with her son, Nick

From left to right: Karen Turner, Lucyna Lach, Patrick McGrath, Donna Thomson, Kathleen O’Grady and Samadhi Mora Severino at the CHILD-BRIGHT Annual Meeting in 2018

From left to right: Julia Hanes, Daniel Goldowitz, To Nhu Nguyen, Kent Cadogan Loftsgard, Annette Majnemer, Frank Gavin and Donna Thomson at the 2018 SPOR Summit

From left to right: Maya Pajevic, Annette Majnemer, Donna Thomson, Symon Hay, Frank Gavin and Corinne Lalonde

Donna speaking at a CHILD-BRIGHT meeting in Vancouver in 2019

From left to right: Michael Shevell, Daniel Goldowitz, Nathalie Major, Annette Majnemer, Adam Kirton, Keiko Shikako, Frank Gavin, Donna Thomson and Steven Miller at a CHILD-BRIGHT meeting in Vancouver

A powerful demonstration of value that research engagement can bring

In recognition of her incredible efforts, Donna will be presented with a plaque as well as registration and travel allowance of $1,000 for a conference of her choice in the U.S. or Canada.

“I am honoured and delighted to be the recipient of the first Frank Gavin Patient Engagement Leadership Award,” says Donna. “To be honest, it is like receiving a lovely and unexpected gift!”

“I am grateful to Frank Gavin for the example of excellence that he set in patient engagement in research at CHILD-BRIGHT and for the positive change that he co-led towards an inclusive culture of childhood disability research in Canada,” Donna adds.

“This award is an important way that we can shine a light on the substantive contributions of patients and families in research and is a powerful demonstration to both the research and patient/family communities of the value that research engagement can bring.”

“A natural leader and humble mentor”

Sharon McCarry, the CHILD-BRIGHT Network’s current Director of Citizen Engagement, congratulated Donna on being the recipient of the inaugural award.

“Even before I met Donna in person, I knew she was a leader who was widely sought after for many roles in initiatives for change within the disability community nationally,” she says.

“I first met Donna as a member of the Parent Advisory Committee for Strongest Families ND a few years ago. She was a natural leader and humble mentor to our group. Over the years, she has continued to shine with confident authority in her knowledge and experience that sets her apart from others,” Sharon adds.

“Her thoughtfulness towards any issue she is asked to take part in is always reflective as she understands how powerful words are, which I find inspiring. Congratulations, Donna!”

Everyone at CHILD-BRIGHT congratulates Donna and we are delighted to be able to celebrate her and her achievements in this way. We are also grateful to everyone who submitted an application in 2021, and recognize the high quality of the submissions we received. Applications for the second iteration of the Frank Gavin Patient Engagement Leadership Award will open in fall 2022.

Check out a selection of Donna’s contributions to webinars and recruitment videos below.

Life Beyond Trauma Program for Parents of Neurodiverse Children with Post-traumatic Stress Disorder

Conducting a Research Trial During a Pandemic: The New Normal?

Learn about the READYorNot™ Project with Parent-Partner Donna Thomson

2019 CHILD BRIGHT Summer Learning Series Webinar #2

Parents Empowering Neurodiverse Kids: The Strongest Families Neurodevelopmental Program

CHILD-BRIGHT National Youth Advisory Panel welcomes presentation on land acknowledgments

As we continue to do our part to root out colonialism and systemic racism in paediatric health care, we are starting conversations about Equity, Diversity, Inclusion, Decolonization, and Indigenization (EDI-DI) at every level of the CHILD-BRIGHT Network.   

Symbia Barnaby

As part of these efforts, we were delighted to welcome Symbia Barnaby to give a presentation on the importance of Indigenous land acknowledgements to members of our National Youth Advisory Panel.   

Living in northern British Columbia, Symbia is an Indigenous woman of Haida and Mi’kmaq descent. Her traditional Haida name is Guu Gang Jung and her spirit name is Warrior Woman. She has consulted, developed, and run many workshops on anti-racism, disability, inclusive education, intersectionality, and health equity through an Indigenous lens. She is currently a member of CHILD-BRIGHT's Citizen Engagement Council (CEC).   

Together, Symbia and the NYAP members discussed the following topics:   

Why land acknowledgments are important and when to use them

During the conversation, Symbia told the group that acknowledging the traditional territory we are on is part of “our collective responsibility to the truth and reconciliation process”.  

“Part of the truth and reconciliation process is truth-telling. We can’t have reconciliation without first telling the truth,” she said.   

“Every person who considers themselves Canadian has a role to help with the truth and reconciliation process. So, every time we do a land acknowledgement, that’s part of us taking up our responsibility as Canadians to engage with that process.”   

“It is also important to take the time to reflect and learn about why this acknowledgement matters to Indigenous Peoples,” adds Symbia. “This genuine commitment to understanding, learning, reflecting, and honouring is key to the relationship building process that this land acknowledgement strives to encourage.”   

Symbia also explained that land acknowledgements are a first step toward including Indigenous voices and perspectives, and shouldn’t be viewed as the end of work to advance truth and reconciliation.   

The group also discussed the many ways and times land acknowledgements can be used (e.g. in email signatures, on websites, and at the beginning of events like conferences, conventions, meetings, and webinars). 

How to find out whose traditional territory we live on

From top left to bottom right: Alix Zerbo, Knowledge Translation Coordinator; Julia Tesolin, NYAP Administrative Assistant; Roberta Cardoso, Research Associate, Knowledge Translation; Symbia Barnaby, presenter and CEC member; Corinne Lalonde, Citizen Engagement Coordinator/Project Manager; Jane O’Faherty, Communications Advisor; Hans Dupuis, NYAP member; Neela Spurway, NYAP member; Lena Faust, NYAP member; Mathias Castaldo, NYAP member; Logan Wong, Chair of the NYAP; Claire-Dawe McCord, NYAP member.

Symbia also shared some resources to help people identify which traditional territory they live on, like Native-Land.ca and Whose.Land.

The group also discussed the differences between “treaty land”, “unceded territory” or intersectional space - words often heard in land acknowledgements, but not always fully understood.   

Treaty land refers to land that Indigenous peoples agreed to share in exchange for payment, goods, or promises as part of a treaty with the Crown. Historically, treaties with Indigenous Peoples have not always been honoured.   

Unceded territory refers to land that has belonged to Indigenous people that was never surrendered or acquired by the Crown.   

There are also areas where the traditional territories of numerous Indigenous communities overlap and the communities share this land and its resources. These communities have a special spiritual, cultural, and economic connection to this land that goes back thousands of years.  

 “For some people, this is the first time they’ve ever had someone talk to them about a land acknowledgement,” she said. “Sometimes, people hear land acknowledgements all the time but they don’t understand the pieces of it.”   

“When we talk about land acknowledgements, if we don’t have that understanding of the history of Canada, it’s really hard to understand what those words mean,” she added.   

What a land acknowledgement should include

Before concluding, Symbia shared tips with the group about what to include in a land acknowledgment, such as:

• Your name, or the name of the organization, company, business, club, or group that you are writing the land acknowledgement for

• Acknowledging positionality, or how our position or the power we hold in society influences our identity. You can do this by sharing if you are a newcomer to Canada, a descendant of a family that settled in Canada, a member of an Indigenous group

• Acknowledging the traditional territory that you are on and explaining whether it is treaty land, unceded territory or intersectional space

• Your commitments or next steps to helping the truth and reconciliation (e.g. familiarizing yourself with the Truth and Reconciliation Commission’s 94 Calls to Action, adding land acknowledgements to email signatures, reading books and watching films that centre Indigenous voices, etc.).

Having cultural humility was also important, said Symbia. This means understanding that we might make mistakes, such as pronouncing a traditional territory’s name wrong, but showing that we’re doing our best.   

“Knowing that you will likely make a mistake is okay. Asking questions and telling people that you wholeheartedly want to know is really important. We need to understand that a big part of this is learning about each other and building safe connections.”  

Going beyond acknowledgement to genuine action

“Symbia’s presentation was great,” said Logan Wong, Chair of the NYAP. “I think it would be important to discuss/think about whether we want to make a collective land acknowledgement or individualized ones based on our geographic locations.”

Meanwhile, Lena Faust said: “What I particularly liked about our discussion of land acknowledgements was Symbia’s recommendation to include a statement on how each of us can go beyond acknowledgement to genuine action on honouring reconciliation in our work.”

Claire Dawe-McCord said she loved the idea of including a land acknowledgement. “It is something I do regularly for school and would be happy to carry over to this context as well,” she added.

“It’s really interesting to have an insight on topics that are not well-understood,” said Hans Dupuis. “This presentation helped to remove the doubt from certain misunderstandings I had about land acknowledgments.”

“The presentation was very informative and helped me have a greater understanding of land acknowledgments,” said Mathias Castaldo. “It showed the group how we can be supportive of Indigenous people and rights.”

NYAP Administrative Assistant and Ph.D. student Julia Tesolin said: “Symbia’s presentation allowed me to develop a more meaningful understanding of why it is so important to acknowledge the land that we live/work on, and I really appreciated her unique and personalized approach of educating us on its significance.”  

CHILD-BRIGHT's land acknowledgement can be found on our EDI-DI page.   

The NYAP, along with the entire CHILD-BRIGHT Network, are grateful to Symbia for her insights and contributions. We all look forward to doing more to centre the voices of First Nations, Inuit, and Métis communities in our work.