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:

Partnering with Parents series: Brenda Blais

Welcome to our new blog series highlighting the invaluable research contributions of our parent partners! 

Parents of children with brain-based developmental disabilities are an essential part of our community of partners with lived and living experience (PWLEs). Their unique insights, both as parents and users of the health care system, allow CHILD-BRIGHT, as a patient-oriented research (POR) network, to ask research questions that matter, design projects with real-world impact, and improve the lives of children with disabilities and their families.   

Today, we’re proud to introduce Brenda Blais, one of CHILD-BRIGHT's newest parent partners and a proud advocate for POR. 

Brenda Blais

CHILD-BRIGHT parent research partner
Joined the network in 2023

Brenda’s passion for disability research stems from years of supporting loved ones. In her own words, she’s “a lifelong caregiver.”

Growing up, Brenda helped take care of her older brother, who was born with physical and cognitive disabilities: “Back then, I never thought of myself as a caregiver. I was just a sister, helping my mom look out for him.” Later in life, she also advocated for her father, a World War II veteran who suffered both physical and cognitive changes following a stroke. “He lived out of province and was stunned at my ability to advocate at a distance,” recalled Brenda, smiling. “I was able to get him all the supports he needed until he passed away 8 years ago at the age of 92.”

When her daughter Nikki was born, Brenda found herself taking on a caregiving role in a whole new way. At birth, Nikki wasn’t breathing, and the lack of oxygen caused severe and irreversible brain damage that resulted in multiple disabilities. “She was never able to walk, talk, or feed herself,” said Brenda. “But she could communicate in the most endearing ways. She was a light and a magnet everywhere she went.” Nikki quickly became her greatest motivator, teacher, and source of inspiration.

As her daughter received medical care, Brenda began to encounter research engagement opportunities. Having previously managed medical offices for clinicians and researchers, she recognized that her professional background, combined with her experience navigating the health care system, made her an ideal partner. Brenda was also heartened to see a shift toward POR. “I hoped that our lived experience would help others down the road,” she said.

Nikki passed away two and a half years ago, at the age of 29—surpassing her initial life expectancy by 15 years. “She filled my life with a purpose and passion, and that will never change,” said Brenda. One way of keeping her daughter’s legacy alive, she feels, is by remaining active in the research community.

In 2023, a fellow parent with lived experience referred Brenda to a study led by Eyal Cohen at the Hospital for Sick Children. Eyal also happened to be the co-principal investigator (co-PI) of the CHILD-BRIGHT research project Assessing and Developing an Adapted navigator role to support Parents during neonatal Transition (ADAPT), along with Julia Orkin. Through Eyal and Julia, Brenda went on to become a co-PI with CHILD-BRIGHT ADAPT.

PIs are typically researchers, but within POR networks like CHILD-BRIGHT, PWLEs are increasingly taking on such leadership roles. Having parent partners like Brenda at the forefront of a study is a groundbreaking step in the evolution of POR!

“It goes back to that saying, ‘Nothing about us without us.’”

— Brenda Blais, PWLE

From ADAPT, one opportunity led to another. In October, Brenda participated in the Knowledge Mobilization and Engagement webinar as part of the 2024 CHILD-BRIGHT Virtual Symposium. She also contributes to the network’s quarterly Theme Meetings. 

Brenda is a firm believer in the importance of research, but that doesn’t mean the work is always easy: “Ethics delays during the ADAPT study were frustrating,” she shared. “I know that ethics can be a slow and laborious process, but it was still a challenge. I had to exercise patience.” She pointed out that, for PWLEs who are less familiar with the research process, these types of delays can be especially discouraging.

Brenda also noted that, while she’s happy that CHILD-BRIGHT has clear compensation guidelines for PWLEs, parent research partners like herself often still experience the burden of bringing up compensation with project teams. “There’s a power imbalance there,” she said. But she is appreciative of organizations like CHILD-BRIGHT that recognize the value that PWLEs can bring to research.

As of 2025, Brenda has been with CHILD-BRIGHT for almost two years, and she’s already seeing the effects of her work. “It’s really great to see how my lived experience has helped shape research in ways that will have the most impact on those who will benefit!” she said.

Brenda’s dedication to brain-based developmental disability research is only growing. She recently completed the Family Engagement in Research Course at McMaster University and will be presenting her group project on ableism in research at the EACD & IAACD conference in Germany this June. What’s more, Brenda has several new opportunities lined up for the new year, including teaching positions. She’s also the new Co-Chair of the Canadian Caregivers Advisory Network (or Caregivers CAN), which aims to build and advocate for a better future for caregivers. “I continue to do what I do because of Nikki and all that she taught me,” she concluded with a smile. 

Postdocs in the Spotlight: Simonne Collins

Welcome to our blog series highlighting the work of our postdoctoral fellows!

Postdoctoral fellows play a crucial role within CHILD-BRIGHT's research projects underway. These fellows are passionate about implementation science (IS) and patient-oriented research (POR) and its potential to improve health outcomes for children and youth with brain-based developmental disabilities and their families. 

Today, we’re delighted to introduce Simonne Collins, the newest member of CHILD-BRIGHT's IS Research Program. 

IMPLEMENTATION SCIENCE PROGRAM

Simonne Collins (she/her)

Postdoctoral fellow, STIC Lab

IWK Health, Halifax, Nova Scotia

From Melbourne to Halifax

Simonne, our newest postdoctoral fellow, hails from Melbourne, Australia. In the summer of 2024, propelled by her commitment to patient-oriented research (POR), she relocated to Halifax to start a CHILD-BRIGHT research fellowship based within the Strengthening Transitions in Care Lab at the IWK Health Centre. Her position with CHILD-BRIGHT is being supported by the IWK Foundation. Simonne has quickly become a pivotal member of the network’s Implementation Science (IS) Research Program!  

Simonne has been a proponent of POR since being introduced to the concept during her doctoral studies in Psychology at Monash University, in Melbourne. Her doctoral studies focused on children at risk of brain-based developmental disabilities. “There were things that we weren’t sure about,” she recalled. “We didn’t know whether we were asking the right questions or if they were even relevant to our population.” 

Ultimately, she and her team decided to consult with parent research partners, and the experience was truly illuminating: “It was so valuable to hear their insights! Hearing from PWLEs allowed us to get at the heart of the barriers they face.” 

Now, Simonne is delighted to be broadening her skillset in POR and implementation science—and the move to Canada adds to the adventure! 

“All our research should be with patient-partners and PWLEs!”

— Simonne Collins, CHILD-BRIGHT postdoctoral fellow

Simonne’s role at CHILD-BRIGHT

As part of CHILD-BRIGHT's Phase 2, the IS Research Program is working to better understand how evidence can be systematically applied in routine practice to improve the quality and effectiveness of pediatric health services in Canada. 

Under the supervision of co-leads Steven Miller and Janet Curran, Simonne is supporting two of the IS Research Program’s main goals: 1) review which IS methods are being used across the network’s Phase 2 projects and identify the unique factors that should be considered by IS project teams when implementing treatments and interventions for children with brain-based developmental disabilities; and 2) understand how pan-Canadian research networks like CHILD-BRIGHT can build IS skills among postdoctoral research fellows. Simonne reviews the projects’ research protocols; conducts interviews with researchers, partners with lived and living experience (PWLEs), and youth partners; analyzes the data; and disseminates the findings.  

Simonne also organizes regular meetings for the network’s postdoctoral fellows, giving them the opportunity to discuss the challenges they’re facing, form connections, and build a community within CHILD-BRIGHT. Experts in the field are invited to some of the meetings to share insights on implementation science methodologies and career development. 

Looking to the future

When asked how she thought her time at CHILD-BRIGHT would impact her career, Simonne was effusive: “Oh, quite considerably!” 

She's particularly excited to be immersed in IS research. “I’m really developing those skills,” she said. She’s also grateful to have the opportunity to work with such a diverse group of health experts, which includes researchers, clinicians, and PWLEs. “I’m building a great network across Canada!” Since her arrival, Simonne has also found it eye-opening to learn about another country’s health care system and its challenges. “And I’m bringing my own cultural insights to the network,” she added. 

Today, Simonne hopes that her research will always incorporate POR methodologies. “I think researchers are getting better at understanding the impact of POR on health outcomes,” she said. “It allows us to address the needs and challenges that actually matter to patients and families.” 

Summer Studentship Program offers 'a new perspective' on POR

Summer students look back on their time at CHILD-BRIGHT 

This summer, we were delighted to welcome 11 undergraduate students to our 2024 CHILD-BRIGHT Summer Studentship Program (SSP): Shannon Walsh, Parya Borhani, Natalie Wong, Muhammad Saim, Megan Liang, Lola Irelewuyi, Hanna Huguet, Anton Santos, Nina Chang, Shannon Tse, and Abigail Hansen. 

Every year, CHILD-BRIGHT helps train a new cohort of students in patient-oriented research (POR) by supporting our project and program teams as they hire students for the summer. In 2024, we earmarked $38,250 to support these undergraduates, who worked with nine program and project teams. 

At the end of the summer, each student was asked to share what they’d gained from the SSP and how they think it will impact their career in health research. Here’s what they had to say!

“The importance of POR is my greatest takeaway from this research experience.”

— Abigail Hansen, 2024 CHILD-BRIGHT Summer Student

A new perspective on patient-oriented research

The 2024 summer students arrived at CHILD-BRIGHT with varied backgrounds and levels of experience. But by the end of the program, they were all strong believers in the value and importance of POR! 

Students who were already proponents of collaborative research, like Hanna, felt that the SSP strengthened their commitment to POR and helped them develop a deeper understanding of its benefits: “My views on the importance of POR remained consistent both before and after the program, as I continue to believe in its value and potential,” Hanna shared.  

Conversely, those who had little knowledge of this research approach agreed that the SSP provided a comprehensive introduction to the principles and practices of POR. Namely, they felt that it clearly presented how the creation of meaningful partnerships with patients, families, communities, and partners with lived and living experience (PWLEs) increases the research’s real-world impact. 

“I was most surprised to learn just how significant the gap is between health research and impact, only further underscoring the importance of POR to the future of research,” wrote Parya. 

For Muhammad, the experience fundamentally changed how he views health research: “My perspective has shifted significantly. I now see POR as a pathway to more ethical and effective research that is deeply attuned to the needs of those it seeks to help.” 

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“The experience of engaging in discussions with professionals and PWLEs alike has been transformative.”

— Lola Irelewuyi, 2024 CHILD-BRIGHT summer student

An opportunity to learn from health experts across Canada

This summer’s cohort unanimously agreed that one of the biggest benefits of the SSP was the wealth of knowledge and tools they acquired from various health experts across the country. They were thrilled to be able to work alongside and learn from a wide range of individuals, including physicians, nurses, researchers, and PWLEs. 

“[The program] offered an opportunity to connect with experts in the field every other week,” wrote Anton, noting that these were “invaluable connections”. 

Many students were especially grateful for the opportunity to work directly with patient and parent advisory committees, as it gave them a new perspective on the population’s unique experiences, concerns, and needs.

Natalie wrote: “I’m committed to applying these insights to future projects, ensuring that the voices and experiences of PWLEs remain central to the research journey.” 

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“I’ve learned that POR is a vital approach to making health care more inclusive.”

— Lola Irelewuyi, 2024 CHILD-BRIGHT summer student

Newfound expertise in KM, IS, and EDI-DI 

In addition to their work embedded with a CHILD-BRIGHT research project and team, CHILD-BRIGHT summer students follow a curriculum that introduces them to key POR concepts. This year’s training series explored the intersections between POR, knowledge mobilization (KM), and implementation science (IS), topics that were deeply appreciated by the 2024 cohort. Muhammad wrote that the curriculum inspired him “to think more creatively about how to disseminate research findings in ways that are accessible and actionable for the communities involved.”

Several other students mentioned that the KM and IS modules gave them new insights on how to bridge the gap between health care practices and research. 

Hana wrote: “I developed a deeper understanding of the many factors that influence research implementation [...] and the importance of ensuring that findings are integrated in a way that’s both approachable and efficient for practitioners.” 

Similarly, many students noted that the program had solidified or sparked their commitment to equity, diversity, inclusion, decolonization and Indigenization (EDI-DI) in health research. They learned about the significance of building meaningful partnerships and how to achieve them while avoiding tokenistic inclusion in POR. 

“I’ve seen firsthand the distrust many marginalized communities have toward the health care system,” wrote Lola. “So, I appreciate how this studentship emphasized how PWLEs enhance research with a personalized approach.” 

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“This process has allowed me to develop a keen interest in clinical research and makes me excited to continue my learning journey in child health POR!”

— Megan Liang, 2024 CHILD-BRIGHT summer student

A program with long-lasting impacts 

Overall, the 2024 cohort's reflections clearly illustrate that the SSP has had a profound influence on their research philosophies, goals, perspectives, and abilities, and will undoubtedly have a long-lasting impact on their careers in pediatric health. 

“As I look ahead to graduate studies, I’m eager to continue my involvement in KM efforts,” concluded Anton. “The skills and knowledge I’ve gained through this program will be invaluable in my future endeavors.” 

Many noted that the program had further encouraged their passion for research and given them new momentum as they looked to the future.  

“This program has shaped me into a more thoughtful and patient-centered research trainee,” wrote Natalie. “I’m excited to continue contributing to health care advancements!”

Interested in learning more about CHILD-BRIGHT's training initiatives and opportunities? Become a newsletter subscriber!

Webinar Retrospective series: Life Beyond Trauma Program

Creating productive working relationships between researchers and partners with lived and living experience (PWLEs) doesn’t happen from one day to the next. It takes time, trust, and mutual respect. But as the following story shows, it’s through these relationships that PWLEs have the power to shape the course of research. 
 
The Life Beyond Trauma Program emerged from one such collaboration. 

Parent research aprtner, author, and advocate Donna Thomson

Co-Principal Investigator Patrick McGrath

In Phase 1 of the CHILD-BRIGHT Network, the Strongest Families Neurodevelopmental Program studied whether emotional and behavioural regulation could be improved in children with brain-based developmental disabilities by providing education, telephone support, parent-to-parent connections, and resource information to the parents. 
 
But as parent research partner, author, and advocate Donna Thomson pointed out, parents in these situations often need support as well. 
 
Donna, who partnered with the Strongest Families ND Program, spoke candidly about her experience on the project in our February 2022 webinar, Life Beyond Trauma Program for Parents of Neurodiverse Children with Post-Traumatic Stress Disorder, provided as part of Children’s Healthcare Canada's SPARK: Live series. 
 
In the webinar, co-Principal Investigator Patrick McGrath (who now co-leads the Phase 2 project Bridging the Gap from Science to Uptake), gave Donna full credit for coming to him with the idea. His lab, affiliated with IWK Health in Nova Scotia, was turning its focus to post-traumatic stress disorder (PTSD), but it was Donna who suggested they study parents of children living with neurodevelopmental disabilities. “Just think about it,” she told him. “We have a lot of PTSD!” 

While PTSD is a mental health problem, Patrick also described it as a disturbance in memory. “High emotional events [...] get coded in a very fragmented way, and there is a whole network of fear that develops.” He explained that this is exactly what occurs in parents of children with neurodevelopmental disabilities. From the moment their child is born, health emergencies and interventions are ongoing and become part of their reality. “That’s what our life is,” Donna told Patrick. “One medical crisis after another.” 
 
It’s a reality Donna is all too familiar with. When her son, who has severe cerebral palsy and medical complexities, was only three, she received a phone call from his school. “Nicholas had had a seizure,” she recalled. For years after this event, Donna felt extreme panic every time she heard the phone ring. But she had no idea that it was a manifestation of PTSD.  
 
According to Patrick, this isn’t uncommon. “PTSD is a hidden problem among parents of children with neurodevelopmental disabilities,” he said. 
 
To shed light on the unique traumas experienced by parents in this population, and to explore avenues for virtual and in-person treatment, Patrick and Donna co-created the Life Beyond Trauma Program. Parent research partners were a major resource and inspiration, said Patrick, citing their vital contributions. “They bring something to the interventions [...] and to our research that we cannot do.” 
 
When creating the study, the team realized there was no instrument to measure the distinct traumas that parents of children with neurodevelopmental disabilities are likely to experience. “One of the things we developed was a parenting trauma checklist,” said Patrick. This allowed them to zero in on parent-specific events, such as witnessing life-threatening situations or having a child in the neonatal intensive care unit. The researchers also accounted for general traumas, as these contribute to what Patrick referred to as “the building block effect”—i.e., the more trauma you have in your lifetime, the more likely you are to develop PTSD. “This was a huge revelation for me,” said Donna. “Prior to this study, I really believed that, with practice, you should get better at managing trauma.” 

Patrick explained that there are many effective treatments for those suffering from PTSD. “The interventions that are most effective are [...] trauma-informed exposure therapies,” he said. In the Life After Trauma Program, the team used online narrative exposure therapy (eNET), in which a clinician helped the participant talk in depth about their trauma. Donna said that, at the start, many parents worried that the intervention would be re-traumatizing. But after their eNET sessions, the parents confessed that the experience left them feeling empowered. Patrick confirmed this is the typical response to exposure therapy: “The vast majority of people begin to feel relief even after the first or second session.” 
 
To conclude the presentation, Patrick stressed the vital need for specific PTSD treatment for parents of children with neurodevelopmental disabilities, offered virtually and in person. “These memory-based mental health problems can be effectively intervened and helped,” he said. “Even in the midst of trauma.” 

Donna expressed that being a parent research partner on this study was truly eye-opening. “It’s been such an amazing journey for me personally,” she said. “I’m a lot kinder to myself in thinking about choices and actions I’ve taken or not taken throughout my own parenting journey.” 

PUBLICATIONS 

Read the following research articles that were published on the Life After Trauma program: 

• Parenting-related trauma exposure among parents of children with intellectual and developmental disorders: Development and validation of the Parenting Trauma Checklist (2022) 

• Risk and protective factors for posttraumatic stress and posttraumatic growth in parents of children with intellectual and developmental disorders (2022) 

• Online narrative exposure therapy for parents of children with neurodevelopmental disabilities suffering from posttraumatic stress symptoms – study protocol of a randomized controlled trial (2021) 

UPCOMING WEBINARS 

Want to learn more about the work CHILD-BRIGHT does? Register for one of our upcoming webinars: