Newsletter – Summer 2024: See What Happens When Families and Researchers Learn to Partner

July 3, 2024 | Newsletters

Dear KBHN Champion,

For six years, Kids Brain Health Network (KBHN) has been partnering with CanChild and McMaster Continuing Education to revolutionize the way science is conducted in the fields of child health and neurodevelopmental disability.

How? Through the Family Engagement in Research Course, which brings people with lived experience and researchers together to learn from each other about how to meaningfully partner in research. Through the stories of founders and graduates, a new video showcases the impacts of this perspective-altering training opportunity.

One challenge that our network’s own family partners have emphasized time and time again is access to disability supports.

With this in mind, KBHN-affiliated researchers have crafted a brief that urges federal and provincial policy makers to put disability services and supports within easier reach for all who require them. One of their key recommendations is to move away from diagnosis-based eligibility criteria in favour of criteria based on what someone requires to function, participate and thrive.

Here are some news you will find in this newsletter:

Discover the impact of family-researcher connections
Parliamentarians visit KBHN and researchers
KBHN welcomes its new Business Development and Commercialization Advisor

Discover the impact of family-researcher connections

The families of children with neurodevelopmental disabilities have unique expertise, and an invaluable role to play at every stage of any research project that aims to serve them.

Since 2018, KBHN has supported the Family Engagement in Research (FER) Course, which trains scientists and families to work together for the sake of producing more relevant and impactful research.

Along with way, organizers and participants learned that the FER Course also leads to connections and community. A new KBHN-produced video captures some of their experiences.

Watch the video

Minister Beech and Minister Bains pose with KBHN staff and researchers

Parliamentarians visit KBHN and researchers

In May, KBHN hosted two local MPs, Parm Bains and the Honourable Terry Beech, at Simon Fraser University’s Surrey Campus. Their visit was part of the federal announcement of the results of the inaugural Strategic Science Fund (SSF) competition. The SSF is an important new funding partner for the network.

Beech “test drove” two KBHN-supported technologies and spoke of how government investment can get proven solutions into the hands of every child who could benefit from them.

Read the full story here

KBHN welcomes new Business Development and Commercialization Advisor

We are thrilled to announce that Richard Simpson has joined KBHN as our new Business Development and Commercialization Advisor!

In his role, Richard will be instrumental in supporting KBHN’s strategic priorities, focusing on driving forward our mission to ensure all children with neurodevelopmental disabilities have access to life-changing innovations across Canada and beyond. Join us in welcoming Richard aboard!

Policy brief: Removing barriers to supports

Eligibility criteria for provincial and federal disability supports are focused on diagnostic labels, and often fail to consider the functional needs of children with disabilities. Furthermore, the application process can be excessively complex, emotionally taxing and financially costly.

Dr. Samantha Noyek, a KBHN trainee and recipient of the KBHN Promising Researcher Award, with the support of Dr. Jennifer Zwicker and Brittany Finlay from the Disability Policy Research Program (DiPo), and Dr. Peter Rosenbaum from the F-Words program, have prepared a policy brief outlining how to improve this situation. Drawing on a strength-based approach to childhood health and development, it offers evidence-based strategies for providing access to all who need it.

Read the English policy brief here

Read the French policy brief here

A child and woman playing on a tablet, with a text overlay of "Invention to Innovation: Equipping Researchers to Make an Impact"

Canada’s universities and institutes produce world-class research, but too often, their ideas and inventions don’t reach very far. Kids Brain Health Network’s host institution, Simon Fraser University, aims to change this reality with its Invention to Innovation (i2I) training programs. So far, 400 researchers — including students, post-docs, faculty and industry scientists—have strengthened their skills in entrepreneurship and commercialization through these learning opportunities. People like them, who can bridge the gap between the lab and the market, are key to unlocking science’s potential to deliver social, economic and health benefits.

Read the full article here

Three Canadian female researchers smile at the camera, with the text overlay "Canadian researchers mobilize the EDIT-CP toolkit, benefitting infants with CP and their families"

A team of Canadian researchers and clinicians have created the first-ever toolkit for early identification and treatment of cerebral palsy (CP). The Early Detection and Intervention Tools for CP (EDIT-CP) toolkit is freely available to all neonatal follow-up specialists, family practitioners, rehabilitation specialists, and families. In the picture, Dr. Annette Majnemer (left), Dr. Darcy Fehlings (centre), and Dr. Tatiana Ogourtsova (right) join KBHN for a virtual conversation about implementing decades of cerebral palsy research to enhance early diagnosis and early intervention for children in Canada and around the world.

Read the full article here

Screenshots of Sue Robins, Yvonne Spicer, and Nancy Lockwood talking in their videos.

Voices from our community

KBHN’s latest annual conference was an opportunity for researchers, trainees, and people with lived experience to come together and share insights and stories. We captured a sample of them in short video testimonials that encapsulate the diverse perspectives and collective passion of the KBHN community.

Discover Nancy Lockwood’s journey at Adopt4Life and how KBHN has enriched her efforts in supporting families navigating aggressive behaviour from children and adolescents. Hear Sue Robins share her experiences as a family advocate. And listen to advocate Yvonne Spicer share her vision for people living with disabilities.

View the videos

Conference attendee wins a customized painting

Artist Ben Lachapelle hands over a seal painting to Jessica Hanson

After completing an attendee survey at KBHN’s annual conference and winning a draw, Jessica Hanson was pleased to receive a hand-delivered, personalized seal painting by autistic artist and author-illustrator Benjamin Lachapelle. We thank everyone who participated in the attendee survey—and we hope to see you at future events!

See more of Ben Lachapelle’s work

KBHN Access Award: Call for proposals

KBHN is excited to offer a limited number of Access Awards to support KBHN members in experiential learning opportunities, including internships, exchanges, and conference participation.

Award Details:

Amount: Up to $1,500 to offset the cost of the activity.
Eligible Applicants: Applicants must be KBHN members at the time of application.
Application Deadline: Rolling call until July 19, 2024, or until all funds have been allocated.
Award Notice: Two weeks after application submission.

Learn more about the KBHN Access Award

KBHN-Mitacs Awards: Open rolling call

KBHN and Mitacs—a national research and innovation nonprofit—invite students and postdoctoral fellows from all disciplines to participate in the KBHN-Mitacs Awards competition.

Successful applicants will undertake internships with non-academic partners such as frontline organizations that work with children with neurodevelopmental disabilities and their families. By leveraging research, these interns will help to address real-world problems faced by families, or help to enhance the services and supports available to them.

Learn more about the KBHN-Mitacs Awards

Screenshot of researchers speaking about AI-based headphones

Showcasing a sound-sensitivity device

Many kids on the autism spectrum are hypersensitive to certain sounds. SFU-KBHN researchers Dr. Siamak Arzanpour and Dr. Elina Birmingham are developing a way to filter these distressing noises out of the soundscape without blocking important sounds such as a teacher’s voice.

The team highlighted this project at a virtual Parliamentary Health Research Caucus event in May. Organized by Research Canada and co-sponsored by KBHN, it allowed government officials and staffers to learn about recent developments in Canadian health research and understand their social and economic benefits.

Learn more…

KBHN a presenting partner to Ontario Brain Institute’s (OBI) public talk “Nurturing the Developing Brain”

KBHN was proud to be a presenting partner of the 2024-25 Brain Health Across the Lifespan series which kicked off with ‘Nurturing the Developing Brain’ on June 17.

A panel of experts in research, advocacy and outreach, and delivery of care presented what scientists knew about the brain from investigation into neurodevelopmental conditions and offered an overview of a relational science approach to brain health. KBHN CEO Geoff Pradella has given the opening remarks.

Learn more…

Call for parents, supporters, or researchers of neurodivergent children

VanTech Med, a health tech start-up dedicated to addressing social isolation and loneliness among neurodivergent populations, is thrilled to introduce you to Sunny-1, an emotionally intelligent robotic companion tailored to engage in empathetic conversations with neurodivergent youth. Their aim? To ensure every individual feels heard, understood, and validated.

VanTech Med is eager to connect with stakeholders – whether you’re a parent, supporter, or researcher of neurodivergent children – to gather invaluable insights into the utility of this groundbreaking technology. Your input could shape the trajectory of well-being for neurodivergent youth everywhere!

If you’re keen on participating in a virtual session over the next two weeks, please share your availability to Michelle at michelle.cai@mail.mcgill.ca.

Considerations for the development of a compassionate virtual peer navigation program for youth with childhood-onset disabilities

Are you or someone you know between the ages of 12-17 and living with cerebral palsy and/or acquired brain injury? UHN is currently recruiting participants for a research study focused on understanding the expectations of transition and the meaning of compassion. If you’re interested in participating or would like more information, please reach out to Eleni at eleni.patsakos@uhn.ca.

Please do not respond/post anything sensitive about yourself. If you are interested in participating in the study, please do not respond to the ad directly; instead, contact the study team.

Participants needed to guide research for sleep health

Help in promoting sleep health equity for all Canadians! The Sleep Health Equity Engagement Project (SHEEP) needs your voice in identifying top research priorities to address diverse sleep needs. If you’re involved in research or work with equity-deserving groups, you are invited to join the steering committee! Meetings are virtual, 3-4 times/year, with compensation at $30/hour (in gift cards).

Send an email to sleep.engage@ubc.ca to join.

Are you passionate about making a difference in the lives of children with neurodevelopmental disabilities? KBHN is seeking a dedicated Communications Manager to lead our communications efforts.

In this role, you’ll spearhead the development and implementation of our communications strategy, covering marketing, corporate communications, government relations, media relations, digital strategy and more. Your goal? To showcase our research impact and stories, increase KBHN’s profile and engage stakeholders and the public.

With funding from the federal Strategic Science Fund and other partners, KBHN has invested over $60 million into 150 projects. Now, we’re looking for someone to help us maximize our impact.

Read the full role description here

Kids Brain Health Network, situated at Simon Fraser University (SFU) Burnaby, respectfully acknowledges the unceded traditional territories of the Coast Salish peoples, including the səl̓ilw̓ətaʔɬ (Tsleil-Waututh), kʷikʷəƛ̓əm (Kwikwetlem), Sḵwx̱wú7mesh Úxwumixw (Squamish) and xʷməθkʷəy̓əm (Musqueam) Nations.