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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?


Don’t miss an episode from Leading Through Stories!

Sign up for the Leading Through Stories newsletter, follow us on Instagram @LeadingThroughStories and subscribe on your favourite podcast platform.

The Storyteller’s Yellow Pages Co-Created

What if a two-minute story could change how a care team sees you? We dive into the power of short, first-person narratives to bring dignity, clarity, and warmth back into healthcare, especially in dementia care where behaviour, memory, and language can obscure the person beneath the chart. Lisa Joworski returns to share how Capturing Essence For Care has evolved from interviews into a connector hub for life story methods, linking digital storytellers, guided autobiographers, videographers, and families who want practical ways to preserve identity.Episode Key Messageswhy capturing essence improves care and communicationwhat digital storytelling is and why ownership stays with the storytellercreating clear elevator pitches and scripts that set expectationsmany paths to story including music, photos, writing and family podcastsbuilding a connector hub for life story resources across methodsBeth’s digital story, Story Slam and the impact of public sharing, Capturing Essence for Care Ep 21advocacy links to Waiting Room Revolution and practical workbooks, Capturing Essence for Care Ep 16 VR training for person-centred communication and reading environments, Capturing Essence for Care Ep 17using AI for drafts while keeping the human voiceprompts that unlock memory such as tattoos and scarsupcoming projects and finding one’s voice with assertivenessOther Links MentionedRead this episode's blog postWatch Lisa's digital storyListen to Lisa's original Co-Created episodeGet your ticket to the April 30th 2026 Story SlamAbout Our Guest Lisa Joworski works in Therapeutic Recreation and is a Life Story Resource who brings together storytellers, artists, musicians, advocates, people living with dementia, healthcare practitioners, and life story experts. Each conversation of her Capturing Essence for Care podcast offers insights and practical approaches for the beautiful ways we can honour our own stories and the stories of those we love—not just for memory's sake, but for the fullness of living and for the care we may one day need. Hosted on Acast. See acast.com/privacy for more information.
  1. The Storyteller’s Yellow Pages
  2. Neurodevelopment, Advocacy & Heart Families
  3. Shame, Story, & Healing in Medicine
  4. Resilience Stories in Vet Education
  5. Bridging Lived Experience, Storytelling & Advocacy

Published by Kristy Wolfe Photography

Kristy is an engaging, open, and honest Common Language DST trained digital storytelling facilitator. She has been speaking and teaching workshops on both photography & digital storytelling for 8 years. With a background in the education, healthcare, and non-profit sectors, she works with diverse audiences, prioritizing ethics in storytelling and storyteller wellbeing.

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