CHILD-BRIGHT Researchers Featured in CIHR's Canada 150 Ranking

Congratulations to Drs Annette Majnemer, Steven Miller, Prakesh Shah and Wendy Ungar, four leading CHILD-BRIGHT researchers, for being featured in the CIHR Celebrates Canada 150 compilation. This compilation highlights health researchers and partners in Canada who are changing lives and making an impact for (and with!) patients nationwide. Read more about their work below.

Congratulations to all other researchers and teams profiled in this wonderful compilation. The future of Canadian research is bright!

Annette Majnemer
CHILD-BRIGHT Director and Principal Investigator

View Dr. Majnemer's Canada 150 profile | Visit Dr. Majnemer's CHILD-BRIGHT Project page

Steven Miller
CHILD-BRIGHT Co-Director & Principal Investigator

View Dr. Miller's Canada 150 profile | Visit Dr. Miller's CHILD-BRIGHT Project page

Prakesh Shah
CHILD-BRIGHT Principal Investigator

View Dr. Shah's Canada 150 profile | Visit Dr. Shah's CHILD-BRIGHT Project page

Wendy Ungar
Co-Lead, CHILD-BRIGHT Health Economics

View Dr. Ungar's Canada 150 profile | Learn more by watching Dr. Ungar's TEDxYorkUSalon AutismInnovations Talk

A Successful First National Gathering: Brain-Child-Partners Conference 2017

From November 6 to 8, 2017, researchers, youth, family members, health professionals, educators, policy makers, and all interested in partnering to advance research in brain-based developmental disabilities gathered in Toronto for our first national conference, the Brain-Child-Partners Conference 2017. 

Co-hosted with Kids Brain Health Network, the Brain-Child-Partners Conference brought together 302 people touched by childhood neurological disabilities and, under the theme of ‘Reciprocity’, we listened, collaborated and exchanged, with the goal of positively impacting each other’s work.

An Active Exchange of Ideas

The event programming was designed to encourage an open and reciprocal exchange of ideas, and we were thrilled to see this unfold! Active dialogue took place on topics such as advances in brain research, mental health, helping families navigate transitions, patient engagement, effective communication channels, the cooperation between basic and applied research, and so much more. View the full event programming here. Thank you to all speakers and participants for this lively and productive exchange of ideas!

Up-and-Coming Researchers

Young researchers and trainees presented their work, met and exchanged with experts in their fields, and took part in a poster competition. Congratulations to the Trainee Poster Award recipients: 

Theme 1: Disease Modeling and Etiology
Awarded to: Jelena Popic, PhD
Postdoctoral Fellow - McGill University
"Metformin rescues impaired behaviors, dendritic morphology and downregulates ERL signaling in Fragile X Syndrome mouse model"

Theme 2: Diagnostic and Screening Tools
Awarded to: Zach Boychuck, MSc (OT) 
Doctoral Student - McGill University
"Partnering with parents & primary care providers: Using consensus methods to determine the early signs that should PROMPT referral for diagnosis of cerebral palsy"

“This is the start of something new. Where our voices matter.”

— Symon Hay, Patient Representative

Theme 3: Interventions
Awarded to: Alicia Hilderley, MSc
Doctoral Student - University of Toronto
"Changes in sensorimotor functional connectivity following gross motor training for children with diplegic cerebral palsy"

Theme 4: Social - Community
Awarded to: John Aspler, BSc
Doctoral Student - Institut de recherches cliniques de Montréal
"What we say matters: Stakeholder perspectives on media coverage and public understanding of fetal alcohol spectrum disorder"

Theme 5: Partnership
Awarded to: Julia Hanes, BSc
Research Assistant - McMaster/CanChild
"Engaging Youth and Researchers: A collaborative video project to spread awareness on the #F-words"

National Visibility & Engagement

An active dialogue also took place outside of the meeting rooms, on social media and in post-conference publications. Read a few here:

See what people had to say on social media about our conference

Read about #BCP2017 on Twitter

It's time for Canada to measure up on kids with disabilities
(Toronto Star, November 12, 2017)

by Stephanie Dunn and Jennifer Zwicker

Read article

Some of my takeaways from the Brain-Child-Partners Conference 2017

by Jessica Geboers

Read blog post

Shut Up and Listen

by Sue Robins

Read blog post

Reflections on our theme of reciprocity

by Kids Brain Health Network

Read article

We wish to thank all attendees for their active participation and involvement in our network. Because of you, our first national gathering was a resounding success!

Sign up to receive our newsletter

Meet 2017 Summer Studentship Recipient: Simon Robins

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Simon Robins, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.   

Name: Simon Robins
Studying: Master of Library and Information Studies, UBC
Focus of summer internship:
CHILD-BRIGHT Optimizing the Management of Pain and Irritability project

"Through the CHILD-BRIGHT summer studentship program, I’ve been able to assist my research team in developing an outreach strategy which ensures successful knowledge translation of our research process and outcomes to a broader audience through a new website. The research project being communicated is titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments,” and is led by Dr. Hal Siden. This study evaluates the assessment and management of pain and irritability in children with neurological impairment. This is a randomized, multi-site trial of a clinical pathway to focus and streamline the evaluation and assessment of this population.

“I made sure to keep in mind the importance of creating a website which is oriented towards patients and their families and is easily understood by non-academics.”

To effectively translate this online knowledge and revise existing content on Dr. Siden’s past projects, I relied heavily on the patient-oriented research articles and the webinar discussions from the summer studentship program. Above all, I made sure to keep in mind the importance of creating a website which is orientated towards patients and their families and is easily understood by non-academics. I primarily achieved this by implementing a user-friendly design and by testing our content on our Family Advisory Committee (upcoming).

For the bulk of my project, I re-designed and drafted new content for PedPalASCNET's website using WordPress. To begin, I reviewed existing content from other lab websites, and drafted content based on trends I found. I then planned interviews to gather families’ stories on their experiences participating in our research, and to test the early designs and content to make sure that they are usable and understandable. Focus groups have been scheduled to gather similar feedback from families.

In addition, I managed PedPalASCNET’s social media/mailing lists. This work with social media directly informed our ongoing outreach strategy by allowing me to analyze our twitter data, our website usage through Google Analytics, and the analytics on our MailChimp emails. We made an effort to find twitter users who identified as families of sick children and track which tweets were popular. As a result, the research network now has a better sense of what the research and patient communities engage with the most, and we have tailored our web content according to these trends.

“I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers.”

As a library and information studies student I am highly interested in outreach and scholarly communications within academic libraries and research networks, and I feel I have gained greater exposure to this type of work by helping to redesign the website and conduct outreach through social media and patient interviews. Through weekly tweets and retweets about current event articles and the latest academic research, I feel more confident about my ability to generate engagement and attract new followers within the research, patient, and caregiver communities. I also feel more confident about my ability to translate knowledge within websites by employing user-centred design and by framing complicated research topics into language that is easier to understand. This above all depends upon caregiver and patient feedback.

In the future I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers."

Meet 2017 Summer Studentship Recipient: Chelsea Yeo

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada. Meet Chelsea Yeo, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

Name: Chelsea Yeo
Studying: BSc (Psychology), St. Francis Xavier University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental project

"The opportunity I had to work on the Strongest Families Neurodevelopmental CHILD-BRIGHT research project opened my eyes to patient-oriented research and what it involves. I learned from collaborating with parent advisors, synthesizing their thoughts and ideas, and learned about the program's themes. Not only did this studentship give me the opportunity to experience a different type of research process, it helped me to see its value.

“Everyone has a story that makes their experiences, ideas and thoughts unique.”

As a young career-minded individual, I believe that working on the SF Neurodevelopmental project reinforced my pre-existing beliefs concerning the value of others’ experiences and will help me in my career going forward. Everyone has a story that makes their experiences, ideas and thoughts unique. This speaks to the importance of being open and able to listen.

Hearing the stories and speaking with parents about obstacles they’ve overcome allowed the intervention to be more specific to the needs of children with disabilities and their families. Specifically, there were many things that these parents experience that can’t be found in a book that made their advice invaluable to our project.

Going forward I will apply this lesson to my career path but also to life in general."

Meet 2017 Summer Studentship Recipient: Elisa Lau

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Elisa Lau, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

Name: Elisa Lau
Studying: BSc (Integrated Sciences with a focus on Genomics and Neurobiology), UBC
Focus of summer internship:
CHILD-BRIGHT IMAGINE project

"I’ve learned so much over this past summer. 

In May I was invited to join the Friedman Lab at UBC as a research assistant on the IMAGINE project, which is a diagnostic study aimed at finding genetic causes for atypical cerebral palsy. It was an amazing opportunity to gain research experience within a clinical setting, and work with a complex team of health care specialists. This was especially valuable to me because I hope to pursue genetic counselling after completing my undergraduate education. 

“I was also given the opportunity to design an information tool to describe metabolomics to the lay public.”

I was fortunate to become involved in IMAGINE right from its beginning. This allowed me to not only directly witness the process of shaping an international research project, but also assist in many of its aspects. My mentors guided me through data handling, clinical chart reviews, specimen collection, presentation skills, and how to properly and respectfully interact with patients and their families.

I was also given the opportunity to design an information tool to describe metabolomics to the lay public. Having just completed an introductory cell biology course in the spring, it was quite the learning curve! Clinical knowledge aside, as an unseasoned student worker, some of the most mundane tasks like juggling a spreadsheet, or planning an effective filing system for data presented as unexpected little challenges to me. 

“I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more.”

Working with the Friedman team completely expanded my view of the genetic counselling profession beyond the limited scope of the information available online. I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more. It is a new and evolving field, and I am very excited to hopefully be part of it in the future. I am thankful to the CHILD-BRIGHT Network and everyone at the Friedman lab for providing me with this studentship experience."