Leading Through Stories: LIVE from Kids Brain Health Network

In a world where healthcare is a complex maze to navigate, particularly for parents of children with unique health conditions like Rett Syndrome, the power of digital storytelling comes into sharp focus. This form of communication has emerged as an incredibly powerful tool, enabling empathy, understanding, and shared experiences within the healthcare community.

Melanie Birch, a mother to a child with Rett Syndrome, offers an insightful narrative of her journey and how digital storytelling has played a pivotal role in her experiences. She uses this medium as a tool to communicate with her daughter’s therapists, classmates, and school, showcasing her daughter’s progress and experiences in a relatable and compelling way. This unique form of storytelling has even reached and impacted medical students and her child’s developmental pediatrician, promoting empathy and a deeper understanding of her daughter’s condition.

The profound impact of Melanie’s digital story didn’t stop there, demonstrating the far-reaching effects of gratitude-focused narratives in healthcare. This emphasizes the power of digital storytelling in not just capturing individual experiences but influencing larger entities within the healthcare industry.

Our other guest, Kristina is a Common Language Digital Storytelling facilitator and was in Ottawa presenting at the Kids Brain Health Network Conference. She enlightens us about her work with the Family Engagement in Research training program, showcasing how shared experiences, can offer solace and a sense of community. As we learn about Kristina’s various roles as a nurse, a mother, and a peer advisor, the extraordinary power of digital stories becomes clear. These narratives, far from being mere recounts of personal experiences, serve to invoke emotions, foster understanding, and share experiences on a broader platform.

Digital stories can be a transformative tool in healthcare advocacy, impacting not just the patient’s journey but also the healthcare community at large. This medium holds the potential to bring about a shift in how we understand and approach healthcare, especially for unique conditions like Rett Syndrome. The use of digital storytelling in research can help translate complex studies into relatable narratives, making them more accessible and impactful.

The experience of Melanie Birch as a mother and a board member of the Ontario Rett Syndrome Association offers a valuable insight into how digital storytelling can help document a family’s experiences, invoke empathy, and even impact policy changes. As we delve into her journey, we see how this medium has been a powerful tool in her advocacy work, helping to bring about change in how we perceive and handle healthcare for unique conditions like Rett Syndrome.

In conclusion, digital storytelling holds the potential to transform the healthcare landscape. It serves as a bridge, connecting personal experiences to broader audiences, invoking empathy, fostering understanding, and advocating for change. This episode underscores the importance of embracing this powerful medium in our healthcare journey, be it as caregivers, healthcare professionals, or advocates.

Melanie’s Guest Blog: Retty Syndrome Awareness

Read Melanie’s guest blog post about Rett Syndrome here or have a look at the 21 weeks photo project that led Melanie to co-create her digital story with Kristy and get involved with Common Language.

About Kids Brain Health Network

Kids Brain Health Network is a national network of researchers and health professionals dedicated to helping children with neurodevelopmental disabilities and their families. They fund collaborative research, train the next generation of developmental neuroscientists, and mobilize our findings for impact.

Learn more about KBHN here.

About Common Language DST

“Common Language was an idea that came out of a very practical need that I had for co-facilitators for projects that I was working on, but it’s quickly grown into this incredible community, and being part of a community like this was really what I’d always been looking for when I started out as a digital storytelling facilitator.”
~ Mike Lang

About Leading Through Stories

Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.

Life is made up of meaningful moments—which ones do you want to share?

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Youth Mental Health & Storyteller Wellbeing – Co-Created

If you care about ethical storytelling in mental health, this conversation gets right to the heart of it: how do you share lived experience in a way that informs others without forcing storytellers to relive the hardest parts again and again?Kristy Wolfe is joined by Katelyn Greer, a lived experience leader whose work spans Kickstand, peer support, youth engagement, and research. Together they revisit the digital story Katelyn created about child abuse, foster care, suicidality, and survival—and why the digital storytelling process felt different from a live interview or repeated public retelling.They talk about what a group workshop can make possible, why feedback helps sharpen the real message of a story, and how digital stories can become powerful tools for staff education, training modules, advocacy, and systems change.You’ll also hear a thoughtful discussion about what audiences miss when they default to “resilience,” why storyteller wellbeing and consent matter, and how lived experience leadership is reshaping research and youth-serving systems.In this episode:- Why digital storytelling can reduce re-traumatization- What made creating a story in community feel supportive- How Katelyn’s story has been used in mental health and training contexts- Why “resilience” can sometimes distract from accountability- How lived experience is shaping peer support and research- Why there are many paths into leadership, advocacy, and academiaA grounded, generous conversation for facilitators, researchers, nonprofits, caregivers, and anyone using digital stories with care.Other Links MentionedKatelyn's digital storyThis episode's blog postKatelyn's websiteImagine Citizens NetworkApathy is BoringDr. Georgina (Gina) DimitropoulosPaCER – Patient and Community Engagement Research, University of CalgaryAbout Our GuestKatelyn Greer is a lived-experience leader and researcher whose work in child and youth mental health is deeply informed by her own experiences of child abuse and neglect, childhood adversity, and involvement with the foster care system. Much of her work has grown from a desire to transform deeply difficult experiences into something meaningful, using what she has lived through to help create better experiences, systems, and opportunities for young people today. She leads peer support implementation for Kickstand, Alberta’s Integrated Youth Services Hubs, and also works in youth engagement and research at the University of Calgary. Her work focuses on child maltreatment, trauma, peer support, and meaningful youth engagement, with a particular interest in creating safer, more ethical ways for young people to participate in research, storytelling, and the systems that affect their lives. She is especially interested in how lived experience can be shared in ways that are powerful and meaningful while protecting the dignity, agency, and wellbeing of the person sharing their story. Hosted on Acast. See acast.com/privacy for more information.

1. Youth Mental Health & Storyteller Wellbeing 26:41
2. Can a Story Change Veterinary Medicine? 27:40
3. Digital Stories in Community-Based Research with Carolyn Brandly 30:02
4. Using Digital Stories in Clinician Training with Dr. Tricia Williams 30:41
5. Digital Stories Belong in Curriculum & Communities with Dr. Mike Lang 29:05