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Happy May everyone!
I’ve been thinking about readiness to be engaged in family engagement lately.
We often focus on mindset; and that focus is important. But there’s also something powerful about supporting the body and nervous system in that readiness. It’s not just about being willing or mentally prepared to engage. It’s also about having the capacity; physical, emotional, even spiritual.
What that looks like can vary across communities. But when we take the time to consider it, those moments can be deeply humanizing.
For example, in a room full of caregivers, coffee and breakfast aren’t just niceties. They may be the first moment someone’s had all day to sit down, catch their breath, and not center someone else’s needs. That kind of support isn’t peripheral to engagement; it enables it.
Readiness for engagement is a rich and layered subject. And it gets even richer when we think about how we intentionally set the stage for collaboration.
Need some help building your community? Connect with me!
Warmest regards,
Rae Martens
Knowledge Broker
Research Engagement Strategist
| Request a Chat With Our Knowledge Broker Rae Martens | | |
Looking for Lived Experience Opportunities in this Newsletter?
Look for the "🌟" to find highlighted opportunities.
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Please Share With Your Networks 🌟
Applications for the Family Engagement in Research (FER) Course are NOW OPEN!
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Have you truly communicated with your research team, or just created the illusion of communication?
This includes your partners with lived experience.
I encourage you to reflect on the “curse of knowledge", a cognitive bias where someone who understands a concept assumes others do too, or that it's as clear to them as it is to you.
For many partners, especially when they're new to research spaces, it can be intimidating to speak up or ask questions in meetings. That’s why it’s essential to meet people where they are, not where you are.
Clarity often requires patience and repetition. Sometimes it takes a different explanation or a more accessible format to really get the message across. Don’t assume understanding, check in.
Foster a space where asking questions is welcomed, not shamed. The more you invest in ensuring comprehension, the stronger and larger your circle of knowledge will become.
| | FER Community Opportunities | | Getting Ready to Partner in Policy 101 🌟 | | |
Join our spring series designed to support lived experience and patient partners in getting ready to share their experiences and insights alongside researchers and organizations.
Who can attend?
People with lived experience, patient or family partners
Researchers and organizational staff
When is it?
May 12 at 7pm EST – Readiness for Partners
May 19 at 7pm EST – Readiness for Professionals
Register here:
May 12: https://lu.ma/ffx93wet
May 19: https://lu.ma/ur9p3gqd
Let’s build better partnerships in policy—together.
| | What's Next After the FER Course? 🌟 | | |
What’s Next After the FER Course?
Reconnect. Reflect. Reimagine Your Learning Journey.
Join us for a special online event bringing together graduates of the Family Engagement in Research (FER) course! Whether you're a researcher, clinician, or person with lived experience, this session is a chance to reconnect, share experiences, and explore pathways for continued growth, collaboration, and engagement after the course. Let’s think together about what’s next. This event will be recorded.
| | Sign Up to Join a Fun Fall Networking Event Online! 🌟 | | |
🌟 Be Part of the FER Lived Experience Showcase!
An invitation to share your story and spark new connections
We’re inviting FER course graduates with lived experience to take part in a special online event that celebrates your voice and creates space for meaningful research connections.
What is it?
The FER Lived Experience Showcase & Networking Event is a chance for you to share a bit about who you are, your interests in research, and what matters to you. You’ll be spotlighted alongside other course graduates and have the chance to connect with researchers and clinicians looking to partner on future projects.
What does participating involve?
- A chance to create a simple 1-page profile to be included in our virtual gallery. Optional support to help you prepare.
- An opportunity to connect with others who care about meaningful, inclusive research.
- There will be a limited number of spots available to do a short (3–5 minute) talk or story during the event. Optional support to help you prepare.
🗓 Event Date: Monday, August 11
🕓 Time: 7pm EST
📍 Location: Online (Zoom)
We’d love to celebrate your perspective and help open doors to future research opportunities. Questions? Just reply or reach out—we’re here to support you!
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Now Accepting Workshop and Webinar Abstracts for the 2025 FER Knowledge Exchange Community of Practice Schedule 🌟
Patient and Family Partners Can Submit Too!
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🌟 Calling all graduates of the FER Course and FER Leadership Academy! 🌟
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.
📢 Who can submit?
- Graduates and Instructors from the FER Training Program (FER Course)
📅 A few example topics include:
- Collaborative research strategies
- Engaging diverse voices
- Best practices in family engagement
Let’s work together to advance family engagement and create impact! Submit your abstract today by clicking the button below.
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🌟Have 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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Intergenerational Wisdom in Family Engagement: Learning, Sharing, and Building 🌟
| | "Intergenerational Wisdom in Family Engagement" explores how lived experience partnership skills are passed down and shared across generations. Discover how parents and young adults are shaping research together, with respect, reflection, and relationship at the core. | | |
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.) 🌟
| | | Can You take 5 Minutes To Help Out an FER Course Group With Their Infographic? 🌟 | | Carina Stumpf, Precious Madzimbe, Brenda Blais, Johanna Linimayr and Juljia Atanasova will be attending this year's EACD conference in Germany to present their tool that they created during the course on ableism. Do you have five minutes to do their survey and help share your impressions of what they developed? Click on the button below to share your thoughts! | |
Beyond Discharge: Stories from the NICU with Fabiana Bacchini 🌟
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Check out FER Course grad Kristy Wolfe's podcast. What happens when personal trauma transforms into powerful advocacy? Fabiana Bacchini, Executive Director of the Canadian Premature Babies Foundation, takes us on a journey through her evolution from NICU parent to healthcare changemaker through the lens of digital storytelling.
The conversation reveals the unique power of digital stories to transcend traditional limitations. Unlike presentations that exist in one moment for one audience, digital stories live online, cross borders, translate across languages, and remain relevant for years. They protect storytellers from repeatedly reliving trauma while maximizing impact and creating space for multiple perspectives – including those of siblings and patients themselves.
Whether you're a healthcare professional seeking to understand patient experiences, a parent navigating your own medical journey, or an advocate looking for powerful tools to drive change, this episode illuminates how personal narratives can reshape healthcare from the inside out. Listen now to discover how digital storytelling is revolutionizing patient advocacy and transforming healthcare one story at a time. The link includes a loopback video on FER Course grad Dr. Peter Rosenbaum's guest spot on the podcast.
| | A Sincere Thank You to Dr. Ganesan for the Glowing Review of the Course! | | |
"Navigating Hope for the HD Community: New HSC-Funded Research Moves the Dial"
By Jo Kaattari
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FER learner Jo Kaattari wrote this article is about three amazing young researchers (Dr. Shaun Sanders, Dr. Dale Martin, and Dr. Melanie Alpaugh) and what brought them to devote their careers to Huntington's Disease (HD) research. These researchers have diverse and impressive academic backgrounds, and they all share the common bond of having a passion for HD research and our community.
This article is also about the HD community, the hope we place in our researchers, and the strong partnerships that grow between us.
For families facing Huntington disease, research resides in the realm of our dearest hopes. This makes us deeply interested in why people who are not impacted by this devastating and rare neurodegenerative disease chose to be involved with our small but mighty community.
| | Members of the FER Community Representing on the Stage at this Year's Canadian Rare Disease Research Network Innovation Showcase 🌟 | | Have a milestone that you're celebrating? Let us know! Email Rae Martens at martensr@mcmaster.ca | | 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. | | If you need any support in signing up for any events or opportunities, please feel free to connect with Rae anytime for support! (martensr@mcmaster.ca) | | Pre-announcement: Recruitment for Canadian Institutes of Health Research (CIHR) IHDCYH's Youth Advisory Council coming soon! 🌟 | | |
Applications will open April 24 to join our Youth Advisory Council (YAC). Applicants may be between 12-25 years old and live anywhere in Canada. Council members are invited to serve a two-year term, meeting regularly and committing about 3-5 hours per month, bringing a youth perspective and their lived experience and interests in health, well-being, and health research to Institute and council projects and priority-setting. Read more about the council, including summaries of recent activities, and find the application link on the council website starting April 24.
We encourage applications from youth including those in Atlantic Canada or Northern Canada; youth not in employment, education, or training; young parents; and youth from First Nations, Inuit, or Métis communities. Help bring new perspectives to our YAC! The application deadline will be May 12, 2025.
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Researchers at McMaster University are looking for disabled children (8-12 years), youth (13-21) years, siblings of disabled individuals (0-21 years), and parents of disabled individuals (0-21) years to participate in a research study involving interviews. They want your help to understand how often excluded disabled children, youth, siblings, families, and researchers engage in childhood disability research partnerships.
Youth, siblings, parents: if you are part of often-excluded group (e.g., fathers, people who are racialized, 2SLGBTQ+, low literacy, does not speak English, experience mental health challenges) and have experience engaging as a partner in research, contact minuka@mcmaster.ca to learn more!
| | Resources and Learning Opportunities 🌟 | | |
🎥 Missed it? Watch the first Kids Brain Health Network (KBHN) Implementation Community webinar now!
💙 April 2025 | A Perfect Pairing: Engagement & Implementation Science
An inspiring and thought-provoking panel presentation including Dr. Andrea Cross, Ms. Sara Pot, Dr. Sarah Munce, and Ms. Rachel Martens. Together, they explored the synergy between engagement science and implementation science, shared strategies used in their child health implementation projects, and offered insights and next steps to strengthen engagement in future initiatives.
📺 Watch the recording: https://kidsbrainhealth.ca/implementation-community/
| | Engaging Children, Youth, and Families in Research 🌟 | | The episode dives deeply into practical considerations for researchers, including when and how to engage youth directly versus working through parents, and how to adjust activities across a wide age span. Michelle and Onalee reflect on how engaging in research helped them transform a difficult type 2 diabetes diagnosis into a source of empowerment and community building, stressing that lived experience is just as valuable as formal education in shaping research. The episode also discusses barriers to engaging Indigenous families in research and offers strategies to build trust, such as involving Elders and creating visibly inclusive spaces. The episode closes with a hopeful message: patient engagement across age groups is less about perfect strategy and more about authenticity, relationship-building, and honoring everyone's contribution as essential towards better, more equitable science. | |
Learn about KidsAction Coaching with Dr. Stephanie Glegg 🌟
May 20 (12–1 PM PST)
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Join us for a free online presentation on May 20 (12–1 PM PST) to learn how KidsAction Coaching is helping children with exceptionalities thrive in community-based physical activity programs.
Presentation Title: KidsAction Coaching: Community Physical Activity Programs Tailored for You
Presented by Dr. Stephanie Glegg, pediatric occupational therapist, implementation scientist, and parent of a neurodivergent child, this session will introduce a set of practical, evidence-based tools for families and program leaders—including over 140 adaptable activities, training resources, and strategies for inclusion and cultural safety.
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Canadian Caregiving Summit 2025 🌟
November 3-4, 2025
| | A brighter future of care is possible. Following the release of A National Caregiving Strategy for Canada, the Canadian Caregiving Summit, hosted by the Azrieli Foundation’s Canadian Centre for Caregiving Excellence, will mobilize caregivers, care providers, systems leaders, policy makers and researchers across the aging, disability and healthcare communities to work together to make caregiving a national priority. It’s time to Act on Care. | |
WHO Launches Global Research Agenda on Knowledge Translation and Evidence-informed Policy-making 🌟
May 15, 7:00am EST
| | Join the World Health Organization (WHO)’s Research for Health Department to officially launch the Global Research Agenda on Knowledge Translation and Evidence-informed Policy-making on Thursday, 15 May 2025. This virtual event will celebrate two years of collaborative efforts between WHO and a diverse group of 130 experts from civil society, academia, government institutions, United Nations agencies, and other international organizations, representing over 40 countries across all WHO regions. | | Growing your influence and a patient partner 🌟 | | |
Join us for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.
Date: May 12, 2025
Time: 12:00 PM PDT / 3:00 PM EDT / 7:00 PM UTC
Speakers: Dawn Barker, Trudy Flynn, Sue McKenzie, and Duncan Redburn.
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A Web App that Aims to Help Researchers Evaluate Their Readiness to Engage with Patient and Family Partners🌟 | | |
Follow us @FERProgram
Contact us at fer@mcmaster.ca
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