Blog
The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2020 is now available.
A special thank you to our funding partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.
Our Report to Community is also available in French.
We are proud to announce the winner of the CHILD-BRIGHT ConneKT Fund, which provides funding of up to $5,000 to CHILD-BRIGHT research teams to help them finance knowledge translation events or products that increase engagement with community partners, achieve meaningful stakeholder participation, and build positive relationships between stakeholders and project members.
Project:
Diagnosis Using Integrated Metabolomics And Genomics In Neurodevelopment (IMAGINE)
Leads
Funding amount granted:
$5,000
Project summary:
Families express feeling abandoned and lost after receiving genomic sequencing results. To address this gap in care, three parent-partners worked with us to develop a customizable e-booklet. This illustrated resource describes genomic results in simple but accurate terms, and provides next steps and support, specific to each family. Having all relevant information in one place helps parents to “quarterback” their healthcare. But this approach is fundamentally inequitable: English-speaking parents benefit, but other language-speakers cannot access it. ConneKT funds will enable us to translate and evaluate this resource in two non-English languages. This pilot project has the ultimate goal of creating multiple versions for wider usage and e-support.
CONGRATULATIONS!
Are you a CHILD-BRIGHT research project with a knowledge translation idea to increase engagement with community partners? Applications for our ConneKT fund are ongoing! For more information and to apply, contact alix-zerbo@child-bright.ca
The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2019 is now available.
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A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.
Our Report to Community is also available in French.
The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2018 is now available.
A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.
Our Report to Community is also available in French.
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."
