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Happy December everyone!
As 2024 comes to a close, we find ourselves reflecting on a year of incredible collaboration, learning, and progress. This year has been a testament to the power of partnershipβfrom the FER Course teamβs dedication to fostering a community of engaged researchers to the inspiring work of clinicians, researchers, trainees and individuals with lived experience who have enriched healthcare improvement initiatives with their invaluable insights.
Together, we have not only advanced the principles of engaged research but also demonstrated the transformative potential of working hand-in-hand to address complex healthcare challenges. Your commitment to creating spaces where diverse voices are heard and valued has set a high standard for what true collaboration can achieve.
Highlights from 2024 include:
- Seven cohorts (3 sponsored, two licensed) this fall, with 182 new graduates joining the FER community, and 23 joining as Leadership Academy graduates.
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We presented at European Academy of Childhood-onset Disability, American Academy for Cerebral Palsy and Developmental Medicine, meeting lots of friends and colleagues from across the world.
- We celebrated CanChild's 35th anniversary and met many other FER community members there.
As we look forward to 2025, we carry with us the momentum of this past year and an unwavering commitment to furthering the ideals of equity, inclusion, and collaboration in healthcare and research. Whether through new projects, continued learning opportunities, or expanding our community, the work ahead is full of promise.
To each of you who has contributed your time, expertise, and lived experience to this journey, thank you. It is through your passion and perseverance that we continue to make strides in what we all do.
Hereβs to celebrating all that weβve accomplished together in 2024 and to the exciting opportunities that lie ahead in the new year!
Warmest regards,
Rae Martens
Knowledge Broker
Research Engagement Strategist
| Request a Consult from Our Knowledge Broker Rae Martens | |
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Looking for Lived Experience Opportunities in this Newsletter?
Look for the "π" to find highlighted opportunities.
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Tips For New Partners π | |
FER Community Opportunities π | |
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Applications for the FER-Youth Course Are Now Open!
Please Consider Sharing With Your Networks. π
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π Calling all youth with disabilities and/or chronic conditions! π
Join the FER-Youth Course and learn how to collaborate effectively with researchers in health research. π§ π€ This exciting opportunity empowers you to make your voice heard, share your experiences, and help shape the future of health research.
β¨ Learn. Collaborate. Lead.
Don't miss out! Sign up now and be part of the change. π¬π‘
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Now Accepting Workshop and Webinar Abstracts for the 2025 FER Knowledge Exchange Community of Practice Schedule π | |
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π Calling all graduates of the FER Course and FER Leadership Academy! π
The FER Knowledge Exchange Community of Practice is seeking abstracts for upcoming webinars and workshops on family engagement. Share your insights, innovative practices, and lived experiences to help foster meaningful conversations and learning.
π’ Who can submit?
- Graduates and Instructors from the FER Training Program (FER Course)
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A few example topics include:
- Collaborative research strategies
- Engaging diverse voices
- Best practices in family engagement
Letβs work together to advance family engagement and create impact! Submit your abstract today by clicking the button below.
| Defining the Scope:Developing Mindful Lived Experience Partnerships for Health Research Ecosystems in an Era of Misinformation π | |
Many people are familiar with the term 'practicing within scope,' which refers to the services, knowledge, skills, and expertise specific to a particular role. But how do we define the scope of practice for research partners, especially in an era of widespread misinformation?
βJoin Rae Martens, Knowledge Broker for the FER Training Program, for a discussion on empowering health research partners as brokers of knowledge within the scope of their lived experience. Rae will also explore how researchers and clinicians can support and empower these partners to build their skills in understanding the research process as they start out as partners in this complex world.
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πHave an Engagement Challenge You're Working Through? Seeking To Design Something New?
Book a free consult with Rae Martens our Knowledge Broker.
Where possible, Rae provides support for partnership matchmaking, research collaborations, and knowledge mobilization planning. For support consider booking a consult by emailing Rae at martensr@mcmaster.ca
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From the FER Writers Room: Donna Thomson | |
GO ON, SAY 'YES' TO RESEARCH - I DID!π
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As an addendum to this blog post, Donna and members of the FER team presented at Nationwide Children's Hospital where she told this story. She said, " I told this story and the chief of staff suddenly interrupted and said, "Dr. di Lorenzo is the head of gastroenterology here at our hospital!" "Oh my goodness, can you text him and ask him to meet me? I want to hug him!", I said. She sent the text and as it happened, Dr. di Lorenzo was out of town, but he sent a message saying that he was so happy to have been helpful and that he was delighted I was visiting his hospital." | |
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Did you know that the Family Engagement Program has a blog on engagement? You can read and subscribe here.
The team is currently seeking researchers and partners who may wish to share their experiences, or best practices.
This is an opportunity for us to learn from you!
Submissions can be sent to Rae at martensr@mcmaster.ca
(1000 words maximum. Themes can vary.) π
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FER in the Community π | |
Congratulations to Alicia Hilderley π | |
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Hopewell M.I.N.D. Prize awarded for research into brain-computer interfaces
UCalgary researchers Adam Kirton and FER Instructor and Graduate Alicia Hilderley were announced Wednesday as the 2024 recipients of the $1-million Hopewell M.I.N.D. Prize, advancing their work in brain-computer interface solutions. βThis injection of funding from the Hotchkiss Brain Institute and (philanthropist) Sanders Lee is a critical support in driving this project forward,β says Dr. Kirton. βThe M.I.N.D. Prize is a driving force behind pivotal research in translational care and treatment in this field.β
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Family Engagement in Research Course Invites Researchers and People with Lived Experience to Help Shape the Future of Neurodevelopmental Research π | |
Most health research relies on some understanding of lived and living experience. However, establishing a link between patient and researcher isnβt always a simple relationship to navigate. The Family Engagement in Research (FER) course helps bridge that gap. | |
Brain Canada Recently Featured FER Course and Leadership Academy Grad Neil Merovitch π | |
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Neil Merovitch will graduate this spring with a PhD in physiology from the Temerty Faculty of Medicine at the University of Toronto. He studied the regulation of learning and memory under the supervision of Julie Lefebvre, an associate professor of molecular genetics at Temerty Medicine and a senior scientist at The Hospital for Sick Children.
Merovitch spoke with writer Julia Soudat about his experience as an advocate, doctoral student and living with a disability.
| The FER Team Presents at a Venture Labs Event to Highlight the Program π | |
Have a milestone that you're celebrating? Let us know! Email Rae Martens at martensr@mcmaster.ca | |
Youth Engagement in Health Research: Combining Evidence-Based & Youth Perspectives π | |
Join Katherine Bailey, Brooke Allemang, Sarah Munce, and Alene Toulany, for an insightful webinar where we explore a recent paper that explores the benefits and barriers associated with engaging youth in research. By combining evidence-based approaches with authentic youth perspectives, this session will highlight the benefits, address the barriers, and provide practical recommendations for meaningful youth involvement. Whether you're a researcher, healthcare professional, or youth advocate, this webinar will equip you with valuable insights on how to foster collaboration and make youth voices a central part of health research. | |
On Belonging. π
"A quote from author BrenΓ© Brown recently popped back into my life. She expresses the idea that the opposite of belonging is fitting in. It got me thinking about the variety of ways that lived experience is invited into the room. So the question remains, βHow do we define belonging in the context of patient and family engagement?β."
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New on the blog: How can we create research teams that truly embrace a sense of belonging? | |
Opportunities From Kids Brain Health Network π | |
2024-2025 Kids Brain Health Network (KBHN) Outstanding Awards π
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Nominations for the 2024-2025 Annual Outstanding Awards are now open! These awards celebrate the dedication and achievements of individuals across the KBHN community who are making a difference in neurodevelopmental disability research and family engagement.
Award Categories:
- Outstanding KBHN Trainee Member Award
- Honours trainees who have shown exceptional commitment and active participation in KBHNβs activities and network initiatives.
- Outstanding KBHN Promising Researcher Award
- Recognizes early-career researchers who have demonstrated significant potential and contribution to advancing research on neurodevelopmental disabilities.
- Outstanding KBHN Mentor/Supervisor Award
- Celebrates individuals who inspire, guide, and support the development of trainees, fostering an inclusive and dynamic learning environment.
- Outstanding KBHN Leadership Award in Family Engagement in Research
- Recognizes outstanding family leaders and inclusive researchers who have demonstrated exemplary leadership and active engagement in research focused on improving the lives of children with neurodevelopmental disabilities.
Award Details for All Categories:
- Certificate and $1,500 to support attendance or presentation at a relevant event by March 2025.
- Awardees will be featured on the KBHN website, newsletter, and social media.
Nomination Deadline: January 24, 2025
Award Announcement: February 28, 2025
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Have questions about whether the FER Leadership Academy is the right next step for you? Consider emailing Rae with your questions. For more information, check out this link. | |
Resources and Learning Opportunities π | |
APELS #5 - Illustrating Your Research: Arts-based Approaches to Knowledge Mobilization π
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This session will take you on a visual journey through various forms of graphic illustration in research, and when and why it should be used. Weβll navigate key considerations and challenges in arts-based approaches to knowledge mobilization to help you craft engaging illustrations for audiences to achieve meaningful and impactful dissemination. | |
Featured FER KT Tool π
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A Patient Partner's Role In Research Guide π | | |
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Follow us @FERProgram
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Contact us at fer@mcmaster.ca
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