What can digital storytelling hold when a diagnosis changes everything?
In this episode, Kristy Wolfe talks with Leslie Ring Adams, executive director of the ALS Society of Alberta, about creating digital stories with people and families living with ALS. The conversation centres on a question that runs through the work: are these stories for advocacy, for education, for family, or simply for the person telling them?
Leslie shares how the ALS Society of Alberta supports storytellers, why the strongest stories are often about relationships rather than the disease itself, and how legacy, consent, and community shape what happens after a story is made. They also talk about caregiving, screening stories publicly, using AI voice technology when someone has lost their speech, and why these stories can help families, clinicians, donors, and researchers understand each other more deeply.
This is a thoughtful listen for healthcare teams, nonprofit communicators, caregivers, facilitators, and anyone interested in ethical digital storytelling rooted in lived experience.
You’ll hear about:
- why ALS stories often focus on the person, not the diagnosis
- how the ALS Society of Alberta uses stories for support, education, and advocacy
- what families need when deciding whether a story stays private or becomes public
- the role of digital stories in legacy-making and storyteller wellbeing
- how story can connect lived experience with research, care, and community
Links Mentioned:
About Our Guest
Leslie Ring Adams has been with the ALS Society of Alberta since 2015 and is currently the organization’s Executive Director. Her connection to ALS began when her mother was diagnosed with the disease. After experiencing firsthand the incredible support the Society provided to her family, Leslie decided to make a career change and join the organization.
While that experience brought her to the ALS Society, it is the people, the mission and the opportunity to make a difference that have kept her there. Leslie considers it an honour to walk alongside individuals and families living with ALS and to be part of a community that shows incredible strength and resilience.
She is passionate about making sure people affected by ALS have the support they need today, while advocating for better treatments, supporting research and working toward a future without ALS.
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