New FER FAMILY ENGAGEMENT IN RESEARCH -TRAINING PROGRAM- Publication CanChild McMaster University The family engagement in research course: impact on family engagement in neurodevelopmental disability and child health research two years later Taylor & Francis Online Journals v Search v Publish v Home • All Journals • Medicine • Disability and Rehabilitation • List of Issues Disability and Rehabilitation › Latest Articles • Latest Articles • The family engagement in research course .... Enter keywords, authors, DOl, etc Submit an article Journal homepage Views 0 CrossRef citations to date 0 Altmetric 4) Listen Research Article The family engagement in research course: impact on family engagement in neurodevelopmental disability and child health research two years later Alice Kelen Soper 2, Sarah Ali, Kinga Pozniak, Donna Thomson, Connie Putterman, Dayle McCauley, ..show all Received 29 Jul 2025, Accepted 28 Jan 2026, Published online: 04 Feb 2026

Exciting New Research Findings!

The FER Team's latest study reveals the long-term (2-year) impact of the Family Engagement in Research (FER) Course on researchers and family members in neurodevelopmental disability and child health research! Link: www.tandfonline.com/doi/full/10....

FER Community Update | January 2026 Email from CanChild Centre for Childhood Disability Research What Does W.A.I.T Mean? January, 2026 Happy New Year! I’ve been following portia.noir (@portia.noir on Threads; @portianoir.com on Bluesky)

We also share exciting community highlights, opportunities for involvement, upcoming workshops, and resources for researchers, patients, caregivers, and partners.
👉 Read the full newsletter: conta.cc/4sJp7Zk
Let’s build meaningful engagement together in 2026! 🌟/2

FER Community Update | January 2026 Email from CanChild Centre for Childhood Disability Research What Does W.A.I.T Mean? January, 2026 Happy New Year! I’ve been following portia.noir (@portia.noir on Threads; @portianoir.com on Bluesky)

✨ January FER Community Update is live! ✨
Start your year with intention and connection.
In this month’s edition, we explore the power of a simple yet profound way to strengthen patient and family engagement. /1

FER Community Update | December 2025 Email from CanChild Centre for Childhood Disability Research Happy Holidays! December, 2025 As we wrap up another meaningful year together, we want to extend our heartfelt gratitude to the families, r

🔹 Festive reflections on family engagement & the holiday season.
🔹 Opportunities for youth voice, training, research participation, and more.
📬 Dive into the full update here 👉 conta.cc/4pIX76l
Wishing you peace, rest, and connection as we head into 2026! ✨
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FER Community Update | December 2025 Email from CanChild Centre for Childhood Disability Research Happy Holidays! December, 2025 As we wrap up another meaningful year together, we want to extend our heartfelt gratitude to the families, r

🔹 A look back on what we accomplished together this year — from global growth to new course milestones.
🔹 Community highlights featuring recent learner publications and lived-experience leadership.
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FER Community Update | December 2025 Email from CanChild Centre for Childhood Disability Research Happy Holidays! December, 2025 As we wrap up another meaningful year together, we want to extend our heartfelt gratitude to the families, r

✨ Our December FER Update is Here! 🎉
As 2025 winds down, we’re grateful for every family member, researcher, trainee, and partner who has helped make the Family Engagement in Research (FER) community vibrant, collaborative, and inspiring. 💛
In this month’s newsletter, you’ll find:
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How can you lay the groundwork for successful patient partnership?

#PxP25 speakers shared practical strategies for building research teams where patient partners feel prepared and supported—no matter their experience or role.

🎥 Watch back: www.youtube.com/watch?v=EnJ6...

I keep seeing, "I saw someone post about being hungry yesterday so I gave them groceries" posts.

Please don't post about keeping us fed for a pat on the back. We see those posts & it reminds us that people may help us & then ask friends for applause.

From Name to Purpose: Tailoring Your Introduction A shared collaboration by the FER Leadership Academy teaching team and leaders from our recent cohort.

This piece reflects the power of collaboration and real-world experience.
We dive into how a name becomes more than a label; how it becomes a mission, a purpose, a movement.
👉 Read it now and let us know: What’s your leadership purpose?
Link: open.substack.com/pub/familyen... /2

✨New Blog Alert!✨
We’re thrilled to share our latest post, “From Name to Purpose: Tailoring Your Leadership Journey,” co-written by the dedicated instructor team of the FER Leadership Academy and inspiring leaders from our current cohort.
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💡 Swipe through our photo carousel for quick tips on showing up with purpose this conference season, and read the full October issue for updates, opportunities, and community highlights.
🔗 myemail.constantcontact.com/FER-Communit... /3

✨ Strategic Visibility: Do Less, But Do It Intentionally.
You don’t have to attend everything to make meaningful connections. Being strategically visible means choosing where, how, and with whom you show up, in ways that support your energy, your message, and your goals.
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OCT '25 FER Newsletter Does conference season have you feeling like... @ferprogram Before you reach for another hotel coffee, consider reading... link in bio

Conference season is here When you're starting out, it's tempting to attend everything - but here's the secret: Practice Strategic Visibility Show up where it aligns with your goals, not where it drains your energy.

Strategic visibility means the intentional effort to be seen, heard, and recognized in ways that advance your meaningful goals. IN RESEARCH Even attending events that you might just find fun is strategic!

READ MORE THIS MONTH'S FER Newsletter link in bio

📣 New FER Community Update is here!
As conference season approaches, our latest newsletter opens with an important reminder for researchers, healthcare professionals, and advocates alike:
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Building skills in science literacy is a positive byproduct of partnering in research. When people with lived experience partner in research, they get to learn more about the whole research process. Their contributions build a stronger study. Communities get to work together, and knowledge moves where it's needed most. While partnering in research is just one way to learn, science literacy is

Want to build your own science literacy skills? Science Up First: Canadian Association of Science Centres Healthcare For Real: Canadian Medical Association Free Science Literacy Course at the University of Alberta

Continued from above:

Building skills in science literacy is a positive byproduct of partnering in research.

This is Rae. Rae started out as a lived experience partner in research. She was there to share her story, but she ended up learning a whole lot about the research process. Partnering in research helped her build her skills in science literacy. Science Literacy Week: Oct. 6-12, 2025

Partnering in research helped Rae learn about: How studies are designed and why. How communities and researchers work together. How evidence becomes practice and policy. How a study connects to people's lives.

What is Science Literacy? Science literacy isn't about memorizing facts. It's about understanding how science works, so you can ask questions, find trustworthy information, and make informed choices. Partnering in research is one way people can learn about the scientific process in real time.

Learning More About the Research Process Helped Rae: -Better understand her child's complex medical care. -Navigate her own cancer journey. -See how lived experience can help shape research. Building her science literacy skills helped change the way she sees the world.

This #ScienceLiteracyWeek, we’re celebrating how learning flows both ways.
When people with lived experience partner in research, they gain new skills in science literacy, and studies grow stronger for it.
Together, we build understanding, community, and knowledge that moves where it’s needed most.

FER Community Update | August 2025 Email from Making Space. 🌿🍃 Getting Ready for Fall. 🍂🍁 August, 2025 Happy August everyone! Making Space Is More Than Just Having A Seat At The Table So, you’ve invited a person with lived experien

Podcast, funding news, courses, jobs, events… it’s all in the newsletter.
Let's make space together—check it out!

myemail.constantcontact.com/FER-Communit...

Apply by Aug 27: Family Engagement Leadership Academy — earn a McMaster University Certificate (10–week program starting Sept 17; only 12 spots!)
New book alert: by Maude Champagne
Big News: U Calgary researchers awarded $2.5 M SSHRC grant supporting neurodivergent individuals and their families/2

Making Space Takes More Than a Seat
This August, we're diving into "making space"—not just inviting family & lived-experience partners to the table, but empowering their voices to be heard and respected (and acted upon!). Plus:
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FAMILY ENGAGEMENT IN RESEARCH - TRAINING PROGRAM - "The course was really structured to give you a lot of tools and confidence to be able to do family engagement." - Researcher CanChild McMaster University CIHR IRSC Canadian Institutes of Instituts de recherche kids brain health network réseau pour la santé du cerveau des enfants

FAMILY ENGAGEMENT IN RESEARCH - TRAINING PROGRAM - "This course has been fulfilling in so many ways. I have learned a lot, but it was the conversations and connections that ring true" - Family Member CanChild McMaster University CIHR IRSC Canadian Institutes of Instituts de recherche kids brain health network réseau pour la santé du cerveau des enfants

Real impact starts with real voices. Hear from a FER graduate about the power of meaningful collaboration.

👉Learn more: tr.ee/lKU4zw

@canchild.bsky.social @kidsbrainhealth.bsky.social
#FERCourse #FamilyEngagement

FER Community Update July 2025 8 tools that bring people with lived experience and researchers bring to research. Plus: A recap of FER in Germany 2025 Congratulations to multiple FER grads in our community Upcoming events Our favourite readings and resources we saw this month

What helped you show up prepared, or made you fee more ready to engage in meaningful ways? Comment below!

📰 Our July 2025 FER Community Update is live! Catch up on what’s new & what’s next in family engagement in research.
📖 Read: tinyurl.com/FERJuly2025

💬 What helped you feel more ready to engage in meaningful ways? Comment below—we’d love to hear!
#FERProgram #FamilyEngagement

Collage of attendees from the EACD conference who were also graduates of the course.

🇩🇪 FER in Germany! So proud to see FER grads at #EACD2025 sharing how family voices shape care + research. From parenting to systems change, they’re leading the way. Want to join them? ➡️ ferprogram.ca #FERProgram #MedicalParent #DisabilityResearch #HealthEquity

Last change to apply for the Fall 2025 FER Course!

📣 Last day to apply!
Are you a parent or caregiver of a child with a disability or health condition? Join the 10-week FER Course to build research skills & connect with families & researchers.
🌍 Open to all
🔗 tr.ee/Z1Kj79
#momlife #Parenting

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👉Learn more: tr.ee/lKU4zw
🔗Apply now: tr.ee/Z1Kj79

@canchild.bsky.social @kidsbrainhealth.bsky.social /2

#specialneeds #medicalmom #disability #parenting #momlife

3 Things Parents Might Not Know About Partnering in Research
You can shape research, not just join it.
Your lived experience is expertise.
Research with parents hits closer to home for real families.
Applications are still open for the Family Engagement in Research Course! /1

If you are in the field of neurodevelopmental disability research, consider giving Kids Brain Health Network a follow!

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Co-learning in the Family Engagement in Research course strengthens partnerships and builds real-world skills in family engagement.
🔍 Learn more: tr.ee/lKU4zw
📝 Apply now: tr.ee/Z1Kj79
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#specialneeds #medicalmom #disability #parenting #momlife
@canchild.bsky.social

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When we take the time to listen, learn, and truly see their stories, we build a world that respects and includes every voice.
Whether you're a parent, a researcher, a clinician, or a community member, your role in that story matters too.

Let’s partner in research that reflects real lives.
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Good news! The deadline to apply for the next Family Engagement in Research (FER) Course has been extended!

Behind every child is a story that matters…

Every child’s journey is unique, shaped by their dreams, challenges, and the people who walk beside them. /1
#patientengagement

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Co-learning in this course strengthens partnerships and builds real-world skills in family engagement.
🔍 Learn more: tr.ee/lKU4zw
📝 Apply now: tr.ee/Z1Kj79
@canchild.bsky.social
#research #researcher #healthcare #pediatrics /2

Good news! The deadline to apply for the next Family Engagement in Research (FER) Course has been extended!
Whether you've already applied or still thinking about it, researchers, now’s a great time to reach out to your current patient or community partner and apply together. /1 #patientengagement