Announcing the recipients of the 2024 CHILD-BRIGHT Graduate Student Fellowship in POR

CHILD-BRIGHT is delighted to announce the recipients of the 2024 CHILD-BRIGHT Graduate Student Fellowship in Patient-Oriented Research! 

This fellowship is designed to create practical training opportunities for graduate students and postdoctoral fellows engaged in patient-oriented research (POR) relating to brain-based developmental disabilities in children. 

This year, the fellowship is supporting our Phase 2 initiatives, which aim to mobilize and implement our research knowledge. POR is integral to evidence-informed health care and CHILD-BRIGHT is proud to support the POR projects of the following two recipients: 

1. Development of the Gamified Version of the Jooay Mobile Application: Promoting Participating of Children and Youth with Disabilities in Leisure Activities 

Recipient: Ebrahim Mahmoudi Kojidi

Project Summary: Play is essential for every child, but unfortunately, children living with brain-based developmental disabilities face challenges when it comes to finding activities adapted to their realities. The Jooay App is a mobile health tool created to help children and youth with disabilities identify and engage in community-based leisure activities, such as sports, arts, and camps in their neighbourhoods. Currently, Jooay is used by over 5,000 rehab and education professionals, families, and youth across Canada. However, the app could benefit over 850,000 Canadian children living with disabilities and their families. 

Working under the supervision of principal investigator Keiko Shikako, Ebrahim aims to understand what mobile app features, specifically gamification features, can motivate youth with disabilities, their parents, and professionals to use the Jooay app more often. Based on their feedback, he will work to design and implement a gamified version of the Jooay App, expand and evaluate its impact, and test strategies to scale up the use of the app across Canada. 

2. Sustainability Planning with the Child-Bright Network

Recipient: Zeenat Ladak

Project Summary: Long-term planning is essential to ensure the sustainability of national health networks such as CHILD-BRIGHT's. Our Legacy and Sustainability Taskforce (LAST) was established to determine how we can sustain the network’s infrastructure beyond 2026. 

Supervised by Dr. Celia Laur, Zeenat Ladak aims to answer two research questions: (1) What aspects of the network contribute to our legacy and should continue to be supported after 2026, and (2) what strategies should be used to support the sustainability of CHILD-BRIGHT's impact and capacity building efforts? 

By using implementation science tools and working closely with the network’s Engagement Council, LAST, and parent research partner Karena Crumpler, the project team will gather and assess member feedback to inform CHILD-BRIGHT's long-term sustainability plan.

Announcing the CHILD-BRIGHT Lived Experience Consultation Service

After more than six years of refining its approach to patient engagement, CHILD-BRIGHT has formed strong relationships with youth and parent-partners across Canada. In turn, our partners have developed expertise in consulting with patient-oriented research projects focused on childhood brain-based developmental disabilities.

We’re now pleased to announce the launch of the CHILD-BRIGHT Lived Experience Consultation Service for researchers external to our network looking to engage CHILD-BRIGHT partners with lived experience in their own research projects.

The consultation service will be offered through one of three avenues, depending on the needs of the research teams, in English and in French: 

• Teams looking to incorporate the perspectives of youth with lived experience of a brain-based developmental disability (ages 14-29) will be invited to work with our National Youth Advisory Panel (NYAP). CHILD-BRIGHT’s NYAP, composed of youth members who have lived experience with a brain-based developmental disability, has provided a consultation service to Canadian researchers working on childhood disability research projects since 2021.

• Teams looking to incorporate the perspectives of parents, caregivers or family members (ages 30+) of a child with a brain-based developmental disability will be invited to work with our CHILD-BRIGHT Citizen Engagement Council (CEC). The CEC is primarily composed of parents of children with brain-based developmental disabilities and other knowledge users. Since 2016, it has provided guidance on embedding partners with lived experience in all network projects and activities, to ensure authentic and meaningful engagement. As of 2023, CHILD-BRIGHT is now opening this consultation capacity up to research teams working in childhood disability across Canada.

• Finally, teams may also consult with both NYAP and CEC members, depending on their needs.

“Our CEC and NYAP members, by means of their lived experience as youth with brain-based developmental disabilities, or as parents or caregivers of children living with brain-based developmental disabilities, have accrued a wealth of knowledge in the patient-oriented research sphere, both because of their lived experience, and because of their time partnering with CHILD-BRIGHT. We’re extremely enthusiastic about putting that knowledge to good use with the CHILD-BRIGHT Lived Experience Consultation Service,” shared Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement.

One Child Every Child awarded $125 million to transform child health research in Canada

The One Child Every Child initiative is a Canada-first research initiative with a vision for all children to be healthy, empowered and thriving.

On April 28, it was announced that the Canada First Research Excellence Fund had awarded a $125-million grant to launch One Child Every Child, led by the University of Calgary with partners from more than 130 organizations across 25 countries, including the CHILD-BRIGHT Network.

We are thrilled by this news and warmly congratulate the University of Calgary and its foundational partners on this momentous step. CHILD-BRIGHT is proud to partner with One Child Every Child to leverage our teams’ respective strengths to achieve common goals related to the health of children with brain-based developmental disabilities.  

Our researchers and patient-partners look forward to working with the One Child Every Child team to share our expertise in neurodiversity and patient-oriented research and to co-create tools and resources that can promote child and family health and well-being.    

As Tommy Akinnawonu, a One Child Every Child youth research advisor and CHILD-BRIGHT National Youth Advisory Panel member, put it: “There are so many different things happening to children in Canada. They’re going through these big walls, walls that could be broken down by access to mental health resources, access to health care, and we’re all gonna play our part in making Canada a much better place for people with mental health issues.” 

In collaboration with the University of Calgary and diverse teams across Canada, we will achieve excellence in research and knowledge mobilization and build a better and more inclusive children’s health care system.   

Announcing the 2022 Training Innovation Fund winners!

We are pleased to announce the winners of the 2022 CHILD-BRIGHT Training Innovation Fund (TIF) competition!

The TIF facilitates innovative training initiatives that complement ongoing patient-oriented research (POR) activities focused on childhood brain-based developmental disabilities. For the 2022 TIF competition, we invited submissions related to the development of innovative tools and resources that develop capacity in the areas of knowledge mobilization, implementation science, or equity, diversity, inclusion, decolonization and Indigenization.

Congratulations to the three winning teams:

Implementation Science and Knowledge Mobilization bite-sized videos for beginners

Lead:

Carrie Costello, Parent Liaison, CHILD-BRIGHT Network, Patient Engagement Coordinator, Children’s Hospital Research Institute of Manitoba and University of Manitoba

Team members:

• Onalee Garcia, Patient-Partner, Can-SOLVE CKD Network, youth with type 2 diabetes, Project iCARE

• Shayna Quoquat, Patient-Partner, Can-SOLVE CKD Network, youth with type 2 diabetes, Project iCARE

• Logan Wong, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Gillian Backlin, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Hans Dupuis, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel
  

Funding amount granted:

$10,000

Project timeline:

Sept 1, 2022 - August 31, 2023

Project summary:

The project team is co-creating a series of bite-sized videos in partnership with youth from CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) and the Can-SOLVE CKD Network. These videos will enable researchers and patient-partners to have a shared understanding of the basic concepts of knowledge mobilization and implementation science with the aim of promoting more meaningful engagement as projects within CHILD-BRIGHT pivot towards Phase 2 priorities.

CEE you!: Critical Ethical Engagement of YOUth in patient-oriented research

Sakiko Yamaguchi

Keiko Shikako

Corinne Lalonde

Shafniya Kanagaratnam

Mathias Castaldo

Linda Nguyen

Lead:

Sakiko Yamaguchi, Postdoctoral Fellow, CHILD-BRIGHT Knowledge Mobilization Program, McGill University

Team members:

• Keiko Shikako, Researcher, McGill University, Co-Lead, CHILD-BRIGHT Knowledge Mobilization Program

• Corinne Lalonde, Coordinator, CHILD-BRIGHT Citizen Engagement Program and National Youth Advisory Panel

• Mathias Castaldo, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Shafniya Kanagaratnam, Patient-Partner, CHILD-BRIGHT National Youth Advisory Panel

• Linda Nguyen, Postdoctoral Fellow, McGill University

Funding amount granted:

$10,000

Project timeline:

September 1, 2022 – August 31, 2023

Project summary:

This project team is co-creating a series of training modules with CHILD-BRIGHT’s National Youth Advisory Panel (NYAP). By exploring the perspectives and experiences of youth, these modules will create a better understanding of youth participation in patient-oriented research and enhance researchers' ethical engagement of youth with disabilities as partners.

Working with each other, our families and our communities: A guideline for partnered research initiatives that support immigrant and refugee families of children who are neurodiverse

Rosslynn Zulla

Andrea MacLeod

Yvonne Chiu

Lucero Vargas

Tsedale Aregawi

Julie Zhu

Atiya Syeda

Rispah Tremblay

Wubetu Biabeyin

Abdullah Ahmed

Danielle Schulte

Leads:

• Rosslynn Zulla, Postdoctoral Associate, University of Calgary, Faculty of Social Work

• Andrea MacLeod, Professor - Dept. Communication Sciences & Disorders, Faculty of Rehabilitation Medicine, Associate Dean - Faculty of Graduate Studies and Research, University of Alberta

Team members:

• Yvonne Chiu, Executive Director, Multicultural Health Brokers Cooperative        

• Lucero Vargas, Bilingual Speech Language Pathologist, Multicultural Health Brokers Cooperative            

• Tsedale Aregawi, Health Broker, Multicultural Health Brokers Co-Operative, Parent of a child with a disability, Eritrean Society Autism Edmonton

• Julie Zhu, Health Broker, Multicultural Health Brokers Cooperative, Chinese community with children with disabilities        

• Atiya Syeda, Registered social worker and South Asian broker, Multicultural Health Brokers Cooperative

• Rispah Tremblay, Senior Manager, Settlement Services, Edmonton Mennonite Centre for Newcomers

• Wubetu Biabeyin, Research and Evaluation Coordinator, Edmonton Mennonite Centre for Newcomers

• Abdullah Ahmed, Program Coordinator – Complex Cases (Youth and Children), Enhanced Settlement Workers in Schools Program, Edmonton Mennonite Centre for Newcomers  

• Danielle Schulte, Program Supervisor, Immigration and Settlement Service, Catholic Social Services

Funding amount granted:

$9,960

Project timeline:

September 1, 2022 - August 31, 2023

Project summary:

This project team is creating a written and video guideline that will enhance the capacity of patient-oriented researchers who wish to work with immigrant and refugee families of neurodiverse children. This project will also help enhance patient-oriented researchers’ competency in broadening the impact of research findings in immigrant and refugee communities.

We received many high-quality submissions this round and thank all those who submitted a proposal!

Citizen Engagement Council welcomes six new members for Phase 2

Since the creation of our network, CHILD-BRIGHT’s Citizen Engagement (CE) Program has fostered meaningful engagement with youth and families. Its Citizen Engagement Council (CEC) is composed of youth and young adults with brain-based developmental disabilities, parents of children with brain-based developmental disabilities, and other members, including researchers and health professionals. The CEC’s role is to offer guidance to the network about embedding patient-partners in all network projects and activities, to ensure authentic engagement.

In order to continue offering this guidance in Phase 2, while assuming leadership nationally in promoting patient-oriented research in child health research, the CEC has been forming new connections and building relationships with new organizations and community groups, and individuals.

We’re now proud to introduce six new members to the CEC from across Canada. Their lived experiences, professional background, and insights as parents of children with brain-based developmental disabilities are a welcome addition at this juncture.

Meet our newest CEC members:  

Elaine Weng

Elaine Weng is a mother of three wonderful children aged 6, 4 and 1. In 2015, Elaine and her husband moved to teach in a small community called Fort Resolution in the Northwest Territories. They love living in the North and all their children were born in Yellowknife. In 2021, they found out their son, now 4 years old, has a rare genetic disorder called chromosome 16p duplication, which is highly associated with autism spectrum disorder (ASD). Elaine’s son was formally diagnosed with ASD in 2022. They decided to move to Yellowknife from another small fly-in community called Whatì for him to get regular speech and occupational therapy sessions. It has been a journey learning about her son, which is why Elaine is thrilled to be a part of the CEC. As a parent with lived experience, it would mean a lot for her to make a difference for other families and children.  

Elaine and her family love the outdoors. They play outside as much as they can until it either gets too cold in winter or too buggy in summer. 

Saba Jahangir

Saba has a Master’s in software engineering and is a freelancer. Saba is also homeschooling her neurodiverse child. She is deeply interested in learning about new research and innovations in the health and technology field. She’s thankful to have the opportunity to assist CHILD-BRIGHT’s diverse research initiatives, which cover a broad spectrum of ages and developmental phases. She finds this prospect exhilarating as it holds the promise of benefiting and shaping the future of our offspring.

Saba’s hobbies are reading, exploring the outdoors, participating and volunteering in various community programs, and spending time with her family. She looks forward to adding value to the CEC through her skills and experiences.

Chenxin Jin

Chenxin Jin obtained her PhD in materials engineering from Dalhousie University in 2016. While working as a postdoctoral fellow in the Department of Chemical and Materials Engineering, University of Alberta, she and her husband welcomed identical twin girls Laura and Layla. Layla has level IV spastic quadriplegia cerebral palsy while her sister Laura is typically developed. With her researcher background, Chenxin hopes to bring her ideas, insights and thoughts to supporting patient-oriented research, as a mom of both a neurotypical child and a child with disabilities.

She enjoys being Laura and Layla’s mom and you will find them involved in lots of community activities, advocating for inclusion and diversity, and spending a lot of time with their family dog.

Karena Crumpler  

Karena lives in the traditional unceded territory of the K'ómoks First Nation.

She was born and raised on northern Vancouver Island and currently resides in the Valley with her husband and two boys. Her oldest son lives with cerebral palsy; her family’s experience is what brings her to CHILD-BRIGHT and the CEC.

It is only in the recent years of her parenting journey that she has learned to trust herself, honour and value her voice, and advocate for her son’s care and consideration. She also has come to recognize that the knowledge brought about through lived experience is valuable and should be heard.

She wants to use her own complex upbringing of being of mixed heritage and reconnecting with her roots and Indigenous ancestry to elevate the needs of parents in more remote communities to be included and heard.

Her volunteer experience includes supporting families who have family members with disabilities. This includes community outreach as well as parent-to-parent support with the Family Support Institute. She is a Director for the Cerebral Palsy Association of BC as well a parent advocate on the BC Cerebral Palsy Advisory Committee with BC Children’s Hospital and Sunny Hill Health Centre. She is also a reflexology therapist – another avenue in her life that emerged from being a mom to a child with a brain-based development disability.

Michelle Vautour-Shales

Michelle is a human resources consultant with close to 20 years of experience specializing in recruitment, talent management and development as well as performance management. She has experience working in Canada and abroad and holds a Bachelor of Arts with a major in Psychology from the University of Ottawa. 

A curious lifelong learner, Michelle is motivated by discovery and by challenging the status quo through innovation and research to improve the outcomes of children with disabilities. Michelle is a strong advocate for knowledge sharing and patient involvement in research, having served as a Family Leader with the Children's Hospital of Eastern Ontario since 2018, where she has reviewed and provided input on a number of research projects. 

Michelle loves to think outside the box and put those skills to work to eliminate barriers to a fully inclusive society.  She is a passionate advocate for inclusion and accessibility and was nominated to sit as an Easter Seals representative on the Special Education and Accessibility Committee for the Conseil des écoles catholiques du Centre-Est.

In addition to her keen interest in research, having lived across the country, on both the Atlantic and Pacific coasts, as well as in Quebec and Ontario, Michelle hopes to bring her resourcefulness as well as her networking skills to CHILD-BRIGHT to help its growth and showcase the important work being done.

Suzanne Deliscar 

Welcome also to new CEC member Suzanne Deliscar!

Welcome to our new members!