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! 

CHILD-BRIGHT welcomes new members of our Citizen Engagement Council!

As CHILD-BRIGHT continues to evolve, we are increasingly working to ensure many voices are represented and heard on our Citizen Engagement Council (CEC), the body overseeing the network’s citizen engagement activities.  

With that in mind, we are thrilled to welcome three new members to the CEC, each bringing their own lived experiences and expertise to the table.  

Chaired by Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement, the CEC provides guidance to researchers on how to engage patient-partners, including parents of children and youth with brain-based developmental disabilities, in their work, and how to share information with them. In addition, the council advises the network on the development and implementation of evidence-informed practices, policies, services, and programs to improve patient outcomes, access to care and quality, efficiency, and effectiveness of health care.  

“I am delighted to welcome new and returning members to the Citizen Engagement Council,” said Sharon.  

“Our council brings together individuals with a range of experiences and perspectives around the same goal of making research more patient-oriented. I am excited about the change we will bring through our shared commitment.” 

The new members commenced their term in September 2021. Get to know them a little better below.  

Symbia Barnaby 

Symbia Barnaby is an Indigenous woman of Haida and Mi’kmaq descent living in northern British Columbia. Her traditional Haida name is Guu Gang Jung and her spirit name is Warrior Woman. She is a single mother of six children, five of whom have special needs. She is trained as a practical nurse, a birth and postpartum doula, and a Reiki Level 3 Practitioner. She is also a storyteller, a filmmaker, and a Wisdom Translator.  

She has consulted, developed, and run many workshops on anti-racism, disability, inclusive education, intersectionality, and health equity through an Indigenous lens.  

Symbia also volunteers as the Co-Lead of the Health Advocacy Team with Moms Against Racism Canada, a national non-profit organization.  

Samadhi Mora Severino 

As the parent of two children, one who has severe disabilities, Samadhi Mora Severino has been a parent-partner and Parent Advisory Committee member with the Strongest Families Neurodevelopmental Program since its beginnings. She is also an emerging equity researcher in the areas of health and disability services and policy. 

A community advocate working with families of children with a neurodevelopmental disability and other disabilities, Samadhi is dedicated to making relevant and important changes in disability services and policies through equity, diversity, and inclusion. 

Samadhi’s experience includes research with children with complex disabilities, adults with disabilities, and Indigenous people with disabilities living in Ontario. As a Ph.D. student at York University, she uses mixed methods and participatory action research in relation to medical assistance in dying (MAiD), home care access, and palliative care access for people with disabilities in Canada.  

Samadhi has served as a member of the technical working group of Ministry of Health and Long-Term Care in Ontario to develop a provincial program for self-directed funding for children with medical complexity. She was previously a community board member for the research ethics board at Public Health Ontario. 

Phil Snarr 

Phil Snarr is from Winnipeg, Manitoba. He and his wife Marilyn have two children, their daughter Julia (aged seven) and their son Jack (aged five). 

Jack lives with cystic fibrosis (CF), and Phil and his family are actively involved in the CF community, both in Winnipeg and across Canada. In their down time, Phil and his family enjoy playing board games, going fishing, and swimming.  

Phil holds a Science degree in Microbiology and Chemistry from the University of Manitoba. Today, Phil works at the Medical School at the University of Manitoba, where his interests include pediatric research, patient-oriented research, and knowledge translation.  

“I think that citizen engagement is incredibly important in both the clinical health setting and in health research,” Phil says. “I am excited to join the Citizen Engagement Council and to share my experiences with the group.” 

Welcoming Carrie Costello as Vice-Chairperson of the CEC 

Carrie Costello (right) with daughter Emma

Alongside our new members, we are also delighted to welcome Carrie Costello as Vice-Chairperson of the CEC. 

Based in Winnipeg, Carrie is a mom to three daughters, one of whom has global developmental delays and a seizure disorder with Todd’s paresis. As CHILD-BRIGHT's Parent Peer Mentor, Carrie has already made invaluable contributions to the work of the council and the entire network. You can read more about Carrie and her work as a parent-partner in this blog post. 

For CHILD-BRIGHT’s Parent Mentor, Support & Advocacy Runs in the Family

At CHILD-BRIGHT, our work revolves around research, but today, we say 'thanks' to our many patient-partners who are engaging in distinct work outside our network also, to help youth with brain-based disabilities in their communities. Meet Carrie & Emma:

Carrie Costello with her three daughters.

In 2019, Carrie Costello, one of our BRIGHT Coaching parent-partners and a mother of three daughters, stepped into the role of CHILD-BRIGHT’s Parent Mentor. Since then, she has connected and collaborated with parents from all over Canada to learn more about their life and experience with disability in their home provinces and about their needs and experiences as research partners. 

Carrie and her family recently made headlines for reasons other than her role as a Parent Mentor, however. Carrie’s middle daughter, Alejandra, has a profound intellectual disability and a seizure disorder with Todd’s paresis. She receives occupational therapy, physiotherapy, and speech pathology support at her school in Winnipeg. When the Winnipeg School Division published its proposed budget for 2021-2022 earlier this year, it indicated its intention to cut these services, arguing the services should be funded by Manitoba Health. However, the School District had not spoken to Manitoba Health about this proposition. This change would also profoundly impact the team approach to supporting children with additional needs. 

When this news hit, the family did not stay still for long. Elder daughter Emma, in particular, leapt into action, mobilizing to start a petition to stop the cut to services.

The petition, and Emma and her family’s advocacy, quickly gained traction, garnering over 4,400 signatures. Emma, along with parents Carrie and Pablo, was interviewed on CityNews, speaking eloquently to the impact that such cuts would have for her sister.

A couple of weeks later, the good news arrived: the 2012-2022 Winnipeg School Division budget would not cut physiotherapy and occupational therapy for students with disabilities.

“I am so happy that it worked!” Emma shared with us. “Not only was it the petition that helped, but it was also the work of many people who stood up against this. I hope that this will help those in power realize the impact of removing occupational and physio therapists.”

Carrie expressed immense pride at seeing her eldest daughter taking a stand: “Watching Emma advocating for her sister means so much to me. When she is passionate about an issue, she throws herself in and makes a difference. It gives me great hope for the future.”

Emma Felices-Costello with sisters Alejandra (right) and Isabel (bottom left)

This does not mark the first time Emma has spoken up as a sibling. In October 2020, she was one of three youth who addressed the United Nations Committee on the Rights of the Child (CRC) during the children’s meeting for Canada, as part of the 87th pre-session of the United Nations (UN) Committee on the Rights of the Child. At the meeting, Emma spoke up on behalf of ‘glass’ children—siblings of a child with special needs, who are often overlooked by the higher needs of their sibling, and who must also often help to support them later in life. Read her full testimony to the committee here.

We’re heartened to see such strong and heartfelt youth advocacy in action! It’s proof that making your voice heard in support of a cause that matters to you can yield great results.

Meet Carrie Costello, CHILD-BRIGHT's New Parent Mentor

Hello, my name is Carrie and I am honoured to be joining the CHILD-BRIGHT Network team as its new Parent Mentor. 

I have three beautiful daughters, ages four, seven and eleven years old.  My middle daughter loves music and hugs.  She also has global developmental delays and a seizure disorder with Todd’s paresis.   My work with her every day is both challenging and infinitely rewarding. I am grateful to have this new position to support the amazing work that CHILD-BRIGHT is doing for children with brain-based developmental disabilities.  The network’s different research projects span such a wide range of ages and stages—this excites me as this research will benefit and impact the future of our children. 

I have both work and volunteer experience as a parent adviser. I sit on CHILD-BRIGHT’s BRIGHT Coaching Parent Advisory Committee, am the Chair of the Rehabilitation Centre for Children’s Parent Advisory Committee, have experience facilitating parent networking and information sessions, and have also served as a panelist at the Children’s Hospital Research Institute of Manitoba (CHRIM) Child Health Days, contributing to discussions on how academics doing research in university settings are assessed.  

I also work as both a playwright and puppeteer in theatre for young audiences. I love this work and have used many of my dramatic skills in my work with my daughter with a developmental delay. I have also incorporated many of the strategies I have learned working with therapists and my daughter into my work as a puppeteer and playwright. 

I will be transferring many of these skills to my new Parent Mentor position: listening carefully, re-telling a story and getting to know my audience. My goal is to help parent-partners be successful in their roles by keeping track of their needs, letting them know what resources are available to help them, and sharing strategies that have been shown to be successful. I will also be their link to the CHILD-BRIGHT Citizen Engagement Council, and will represent their interests on CHILD-BRIGHT’s Training Committee.

If you have questions, concerns or would like to share a story, please contact me at parent.mentor@child-bright.ca. I look forward to getting to know you!