Happy August Everyone!
Can you smell it in the air? See it in the trees? Little glimpses of fall here in Canada and I am here for it.
Where has this year gone? The FER team is prepping for its fall cohort, and we’ve brought you a few new resources here in the newsletter!
There’s one aspect of the newsletter that we would like you to check out. In the section with the infographic about keeping in touch, there is a hyperlink that directions you to filling out a Bio. As a grad of the course, we would like to feature your research interests on the Kids Brain Health Network website. This bio section will also serve as a way for researchers to find you as well and potentially connect when it comes to upcoming studies that need a partner. Consider checking it out and filling out the survey details so you can benefit from the potential networking.
If you have any questions or would like to schedule a check-in for support or consultation, please feel free to email me at martensr@mcmaster.ca
Cheers!
Rachel Martens
Research Engagement Strategist
Kids Brain Health Network and CanChild
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FER Course News
Let's continue to stay connected!
The FER Team has summarized all the ways we can continue connecting and networking with each other.
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The purpose of the FER Student & Grad Short Bio is to learn more about you and your interests. Additionally, we would like to build a family-researcher database to facilitate research partnerships among FER grads. Click here or the button below.
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Luke's Legacy Research Rounds
August 25th, 2021 | 7:00 to 8:00 PM EST
Life Beyond Trauma
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Congratulations to FER Grad (Fall 2020) Mackenzie Salt joining the Canadian Autism Spectrum Disorder Alliance (CASDA) as part of #GoC’s Health System Impact Fellowship. He will be working to address real-world health system challenges to improve outcomes of Autistic Canadians & their families.
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FER Grads (Winter 2021) Kristy Wolfe, Chelsea Durber, Lawrence Ng, and Joanne Tay developed a video that features their stories, as researchers and caregivers, of how and why they became involved in research. This "I Was There Too" conversation is a discussion about why it is important for families to have a seat at the research table and includes resources to help families get involved in research.
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FER Grad Photo Featured on Cover of CFP Journal
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The Canadian Family Physician (CFP) Journal has featured FER Grad (Winter 2021), Kristy Wolfe's photo as their cover image. The picture captures a quiet moment between Kristy’s husband and their son amid the realities of a medical family.
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A Must Read Book by FER Grad
Pure Grit: Stories of Remarkable People Living with Physical Disability
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Written by: Lily Collison (Winter 2021 FER Grad) and Kara Buckley
Published by: Gillette Children's Healthcare Press
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Nineteen people from across the globe, ranging in age from twenty to seventy-plus, tell their stories of living and thriving in diverse fields – in sport, the arts, medicine, business and more. With refreshing frankness, they share their successes along with their struggles – grit is the one characteristic they all have in common. These are not stories of people overcoming disability – they’re stories of people accommodating disability while pursuing their dreams. Pure Grit shines a light on boundless possibility whatever the individual challenge.
Available on: Amazon Canada (and all Amazon marketplaces), and to order through bookstores.
All proceeds from the book go to physical disability research.
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Pure Grit is about being determined, taking opportunities, and most importantly, driving social change.
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Upcoming Conferences and Webinars
2021 SPOR Northwest Virtual Institute
Register by September 28th
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Every Friday in October, the Alberta SPOR Support Unit and their SPOR-funded partners across western and northern Canada will host top experts in patient-oriented research for the 2021 SPOR Northwest Virtual Institute. The theme for this year, Evolution and adaptation in patient-oriented research: Infectious ideas for a changing world, will shed light on the important role patient-oriented research plays in improving public health in a post-pandemic world. All welcome and registration is free!
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Funding Opportunities
Mitacs-KBHN Awards Competition
Application Deadline: August 30th, 2021
Award Notice: Before November 15, 2021
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Eligibility: Undergraduate, college and graduate students, postdoctoral fellows from all disciplines interested in neurodevelopmental disability research.
Award: Ten internship stipends of $20,000 maximum including $5,000 contribution from KBHN, and a $3,250 contribution from the participating agency or business. The awardees will also be waived registration fees to attend and present at the KBHN Annual conference. The funding will be paid to the academic supervisor for eligible research projects that meet Mitacs guidelines.
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2021 CHILD-BRIGHT Graduate Fellowship Award in
Patient-Oriented Research
Application Deadline: September 5th
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CHILD-BRIGHT is accepting applications for the 2021 CHILD-BRIGHT Graduate Fellowship in Patient-Oriented Research! The competition aims to enhance the training experience of graduate students and postdoctoral fellows working on patient-oriented research projects focused on brain-based developmental disabilities in children. For 2021-22 a total of $50,000 in funds are available (maximum of $10,000 awarded per successful applicant).
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FER Employment and Engagement Opportunities |
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SPOR Online Discussion:
Future areas of focus for patient-oriented research
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Study Recruitment
Parent Partner Experiences
Recruitment on behalf of Carrie Costello and Laesa Kim
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CHILD-BRIGHT Parent Peer Mentor Carrie Costello and PIUO Family Liaison Laesa Kim are co-leading a study on the benefits and drawbacks of using personal connections and networks for recruitment in research.
The research team is seeking participants who are parents of a child with a chronic health condition to participate in an interview or focus group discussion. Participants will be compensated for their time.
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Caring for Siblings with Disabilities
Recruitment on behalf of Kate Guzzo-Foliaro (Fall 2020 FER Grad)
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For more information and to complete the survey click here
Research project is being completed by Katherine Guzzo-Foliaro, Master’s student, Department of Social Justice, Lakehead University. Supervised by Dr. Geoffrey Hudson, Northern Ontario School of Medicine, Lakehead University
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Recent Publications
Publication by FER Research Engagement Strategist
Don’t tell me, show me: Reactions from those with lived experience to the 2020 revised IASP definition of pain
“Did you know that the clinical definition of pain hadn’t changed until recently? There’s a greater depth and nuance to the subject of pain that I’m happy to say has been now recognized. However, it’s one thing to define it and another thing to see these things implemented in practice. As a stakeholder, I wrote a little bit about my experiences caring for my son and supporting a sibling with a severe pain disorder.” - Rachel Martens
Authors: Isabel Jordan, Rachel Martens, and Kathryn A. Birnie
(Pediatric and Neonatal Pain)
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Publication on Patient Engagement in Research
Editors-in-chief perceptions of patients as (co) authors on publications and the acceptability of ICMJE authorship criteria: a cross-sectional survey
The authors carried out a survey among Editors-in-Chief of various medical journals. They wanted to determine: 1) editors attitudes towards patient partners being co-authors on research publications; and 2) editors perspectives on the applicability of the International Committee of Medical Journals Editors (ICMJE) criteria for authorship to patient partners. The study found that although the majority of editors surveyed thought it was acceptable for patient partners to be co-authors on research publications, 30.8% did not. In terms of the applicability of ICMJE authorship criteria to patient partners, editors had a mixed range of opinions. Ultimately, the authors conclude that these gaps can be barriers to patient engagement in research. This creates a need for education and consensus-building, so that we can implement procedures allowing patient partners to be equitably involved in research.
Authors: Kelly D. Cobey, Zarah Monfaredi, Evelyn Poole, Laurie Proulx, Dean Fergusson & David Moher
(Research Involvement and Engagement)
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Follow us @FERCourse
Contact us at fer@mcmaster.ca
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