June 2021
Happy June Everyone!
I hope wherever you are, it’s sunny days!
The team has been extremely busy working on a number of facets of the FER course, it’s hard to keep track. We look forward to keeping you posted on the details throughout the summer.
We wanted to say congrats to our lead Andrea who recently welcomed a second little one into their family and happy to say: It’s a boy!
Our first learning lunch opportunity will be coming this fall as a part of our extended community of practice. We’ll be discussing strategies for authentic engagement and building of trust through online communities during the pandemic using social media. Keep an eye out for more details.
Kids Brain Health Network is offering an opportunity through their conference this November for you to feature the KT tools you developed within the course. Abstracts are now open. These abstracts can be written as well by community members or parents. So if you need any support in doing so, please don’t hesitate to email me at martensr@mcmaster.ca Information on how to submit is further down in the newsletter.
Let us know what you’re up to! We’d love to hear about it!
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
Luke's Legacy Family Research Rounds
June 23rd, 2021 | 7:00 to 8:00 PM EST
Youth Telling Their Stories in Research
FER Course News
Baby Announcement!
The FER Team is thrilled to introduce the newest member of Andrea Cross' family! Matthew Gordon Labenski was born on June 2nd weighing 8lbs!

We wish Andrea all the best while she's on maternity leave until April 2022.
Spotlight on FER Grads

Congratulations to our FER Grad (Fall 2020), Chantel Ritter for completing her oral qualifying exam for her PhD!

In her doctoral work, Chantel will be studying the role of strengths for justice-involved youth with FASD.
Featured FER KT Tool
FER Grads (Fall 2019) Ariel Taylor, Marion Knutson, Jeffrey McCrossin developed a glossary to support communication between researchers and family members who are partnering in research. It's normal for some family members to feel a bit lost in the jargon and slang researchers use regularly in their line of work. This glossary is a starting point for partners to develop a shared language. Click the glossary (left) to download the tool.

FER Grad featured in CMA Health Advocate blog:
"Family with two special-needs children embraces virtual care during pandemic"
FER Grad, Sara Pot, and her two daughters,
11-year-old Janneke and 14-year-old Rachel.
“I saw so many benefits from [virtual care] and yet was puzzled in my role as a support parent that families were nervous about it… I want to share our positive experience so that others won’t feel so intimidated and would see some benefits to it.” - Sara Pot, FER Grad, parent, educator.

Click here to read the CMA blog about Sara Pot's experience with virtual healthcare for her two daughters.

Time to be Counted: COVID-19 and Intellectual and Developmental Disabilities
FER course Grad (Winter 2021) Jennifer Zwicker, and FER Co-instructor Donna Thomson are co-authors of a report on Time to be Counted: COVID-19 and Intellectual and Developmental Disabilities.

This report comes from the Royal Society of Canada (RSC) Task Force on COVID-19, which was mandated to provide evidence-informed perspectives on major societal challenges in response to and recovery from COVID-19. 

Click here for more information and click the document (left) to download the report (accessible version here).
Upcoming Conferences

Kids Brain Health Network Conference - Call for Abstracts:
Realizing Change Through Partnerships and Innovation
DEADLINE: July 16th | 4:00 PM EST
The Kids Brain Health Network is seeking E-poster and oral presentation contributions that span all disciplines and all levels of experience (e.g., trainees, early career and senior researchers and clinicians, community partners, people with lived experiences, family members, and/or professionals). We encourage presenters from diverse backgrounds and training levels to submit an abstract, including non-academic researchers and community advocates. We encourage you to submit an abstract about your FER KT Tool with your group members. This is a great opportunity to disseminate your work!
Funding Opportunities

COVID-19 Research Funding Opportunity
Deadline: Week of July 26th
The Institute of Population and Public Health (IPPH) is partnering with other Canadian Institutes of Health Research on upcoming funding opportunities, as part of the Government of Canada's continued response to address the health challenges of the COVID-19 pandemic. The funding opportunity is designed to support rapid mitigation, as well as to inform policy and the development of approaches to address both recovery and longer-term consequences. Researchers will be encouraged to leverage existing cohorts/samples/health administrative, educational, surveillance and other data sets, by using existing data and/or collecting additional measures as necessary.

Availability of funds
  • CIHR will provide a total amount of $3,200,000, enough to fund approximately 21 grants.
  • CIHR will provide a maximum of $150,000 per grant for one year.
FER Employment and Engagement Opportunities
Work with CHILD-BRIGHT’s Communications Team
CHILD-BRIGHT is accepting applications for a part-time Communication Advisor. This is a 14-week Canada Summer Jobs opportunity. The Communication Advisor will help produce and update communications content, document the impact of patient and youth engagement in our network, and help share the perspectives of our members, especially youth members.

The MaRS and CIBC Inclusive Design Challenge:
Access to Work
DEADLINE: June 30th | 11:59 PM EST
The first innovation challenge in this series seeks solutions to support accessible career entry for individuals with disabilities. The Inclusive Design Challenge is looking for individuals, groups, and organizations with a solution to make finding meaningful employment more accessible. Five winners will be awarded the following prizes:

  •    A first place prize of $50,000
  •    2 runner-up prizes of $20,000
  •    2 honourable mention prizes of $5,000
 In-kind support provided by MaRS and CIBC including access to scaling pathways and adoption-oriented activities.
Training Opportunities

Ongoing self-paced online education training:
Indigenous Community Research Partnership
Indigenous Community Research Partnerships is an online open education training resource through Queen's University, Kingston, Ontario. The training aims to assist researchers who are new to research in partnerships with Inuit, Métis and First Nations communities.
Recent Publications

Publication by FER Grad
Mothering Children with Disabilities through COVID-19

This chapter examines the experiences of mothers of children with disabilities during the first six months of the COVID-19 pandemic. Although it is increasingly well documented that the COVID-19 pandemic is taking a disproportionate toll on the lives of mothers everywhere, mothers who have children with disabilities face particular challenges. However, many of the COVID-19-related phenomena that the majority of people experience as a profound disruption of their normal lives are, in fact, nothing new to these mothers. Paradoxically, they also benefit in unexpected ways from some of the new mechanisms of access and connection that have been widely adopted as a result of COVID-19. The mothers’ accounts point to the need to rethink many aspects of our social organization, central among them being the role that care work plays in the functioning of society

Author: Kinga Pozniak and Olaf Kraus de Camargo
Publication on Patient Engagement in Research
Developing a Canadian evaluation framework for patient and public engagement in research: study protocol

This project aimed to develop a national adaptable framework for evaluating patient and public engagement (PPE) in research. To create this framework, the authors consensus on common evaluation criteria and indicators for PPE in research and defined recommendations to implement and adapt the framework to specific populations. The evaluation framework was co-designed with a national coalition of patient-oriented research leaders, including patient and community partners, engagement practitioners, researchers and health system leaders.

Authors: Audrey L’Espérance, Nadia O’Brien, Alexandre Grégoire, Julia Abelson, Carolyn Canfield, Claudio Del Grande, Maman Joyce Dogba, Carol Fancott, Mary Anne Levasseur, Christine Loignon, Annette Majnemer, Marie-Pascale Pomey, Jananee Rasiah, Jon Salsberg, Maria Santana, Marie-Claude Tremblay, Robin Urquhart, and Antoine Boivin
(Research Involvement and Engagement)
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