- 6 participants created powerful digital stories in this 20-hour workshop
- 100% surveyed said they would share their stories, both with people they know and publicly
- 100% would recommend the project be repeated and would recommend the process to a friend
Kristina McGuire is a healthcare provider, Congenital Heart Disease parent, and digital story creator. She has volunteered with Heart Beats Children’s Society of Calgary for more than eight years since receiving support from the organization shortly after her son’s birth. She currently serves as the non-profit’s board secretary.
“Heart Beats was a lifeline for my family,” says Kristina. “It was instrumental in keeping us going. They introduced us to families who had already been there and knew what we needed. I was so grateful for all of it.”
A small team of volunteers with a big impact
Heart Beats Children’s Society of Calgary is a non-profit charity organization supporting patients with Congenital Heart Disease receiving care at the Alberta Children’s Hospital, as well as their families. Run entirely by volunteers, the organization offers critical connection, support, and information to families whose children have been diagnosed with Congenital Heart Disease.
Partnering to share necessary stories
Heart Beats trusted Kristy Wolfe Stories to help six of the medical families in their community tell their personal stories. The organization teamed up with Kristy to offer a guided 20-hour workshop where participants developed their digital stories. This process can be therapeutic, allowing people to share a story on their family’s terms and in their own time. It can also create meaningful audience engagement that affirms the participant’s journey, if and when the story is shared more broadly.
A meaningful collaboration
Working with Kristy Wolfe enabled Heart Beats to amplify the voices of their community members, and share their stories to help other patients and families. After a successful workshop and participant experience, Heart Beats and Kristy are looking forward to future collaborations in support of these families and the impact their stories will have on their community.
“As an organization, we need to grow with our kids, our families, and their different needs. It’s imperative for us to actively seek out sponsors and support — because our kids aren’t going anywhere. And that’s the best part about it.”
KRISTINA MCGUIRE, BOARD SECRETARY, HEART BEATS CHILDREN’S SOCIETY OF CALGARY
Grass-roots organization started by families, powered by volunteers
Heart Beats Children’s Society of Calgary is a grass-roots registered charitable organization offering support, education, and community for families of children with Congenital Heart Disease since 1987.
Heart Beats is run solely by donation to create awareness, and to provide information, emotional support, and financial assistance to families whose children are receiving medical care or undergoing cardiac surgery.
The organization connects with families of children with Congenital Heart Disease to offer vital support after diagnosis. This can include a connection with a parent who has experienced something similar, to help with groceries, accommodations, and other details to allow them to focus on caring for their child.
Finding new ways to share the organization’s impact
Heart Beats has grown from half a dozen parents running the organization from their kitchen tables to a thriving support network with the potential to make an enormous positive impact during a critical time for families of children with Congenital Heart Disease.
“A lot of families, unfortunately, don’t have a community for this kind of peer support,” says Kristina. “We can reach people who wouldn’t have gotten the support they need and open up that access.”
The organization needs impactful ways to raise awareness, connect with families, share important stories, and reach donors who want to get involved and support their mission.
With its team of volunteers, Heart Beats has been pouring effort into supporting families during what can be difficult, stressful, or even traumatic times.
“Every story is so different, but the feelings that come out of it are all relatable,” says Kristina. “The thread that connects them all is the emotions felt in that space, about the unknown, being vulnerable, and looking for hope and comfort.”
Limited resources often challenge non-profit organizations in raising awareness and sharing impact. Finding a compelling way to reach donors, potential volunteers, and families needing support is imperative to carry on the work of Heart Beats. Sharing stories of others who have experienced similar journeys offers encouragement, perspective, and much-needed support.
“These are significant experiences that can be difficult to read about in books,” says Kristina. “Books on this topic can be really sad and disheartening, and we wanted to explore an opportunity to share those stories that can be empowering and educational.”
Looking for a new perspective on non-profit storytelling
In the spring of 2022, Kristina participated in a digital storytelling workshop specifically for medical parents with Kristy Wolfe Stories. She created her own digital story about her experience parenting a child with Congenital Heart Disease, later pursuing training with Common Language DST to work with others to tell their stories.
Kristina could see firsthand the impact of digital storytelling on patients and families at the hospital. People could share their personal stories in a meaningful way, while also sharing awareness and education with others. She suggested they bring digital storytelling to Heart Beats to allow families to document their experiences and insights in an empowering way.
Heart Beats collaborated with Kristy Wolfe to plan a Digital Storytelling Retreat. The project included storyteller recruitment, advance preparation for the workshop, the Digital Story Retreat, screening for family and friends, and support for later sharing of the stories created.
“With digital storytelling, our hope is that those conversations and sensitive topics can be shared in safe and authentic ways,” says Kristina.
Empowered storytellers create meaningful impact
Six adult storytellers with Congenital Heart Disease attended the 20-hour Create Your Digital Story: Full DST Workshop storytelling retreat in May 2023, creating digital stories using the four-step Common Language Digital Storytelling Process.
The workshop was led by Kristy Wolfe, who facilitated the entire process, supporting participants in writing their stories, creating voice-overs, and choosing visuals and music to create compelling and impactful stories.
“Every time someone tells their story, it’s like they are taking their heart out and putting it out for the world to see. It can be painful and vulnerable, but they do it because they want to share it,” says Kristina. “How it’s received is impactful on the storyteller.”
Creating a digital story allows patients and families to control the narrative and decide which piece of their story is most meaningful to share, and what response they want to evoke in an audience. Kristy Wolfe enables powerful storytelling while protecting storyteller wellness by offering participants the chance to craft their own narratives and decide which parts they are comfortable sharing.
“It becomes therapeutic for many of these families,” says Kristina. “It gives them back that control. A big part of trauma is not having control, not feeling safe, not having trust.”
Offering participants a voice, a community, and a platform
“Working with Kristy Wolfe was magical,” says Kristina. “She has so much energy and creativity. She can encourage creativity in the participants while creating a safe place for their emotions and stories because she understands the intensity of the emotions that come with it.”
Of the six participants surveyed, all indicated they would share their stories with people they know, and were willing to share them publicly. All would recommend the project itself be repeated and would recommend the process to a friend, and five of the six could see themselves creating another story.
Heart Beats can see enormous potential in the kind of storytelling they’ll be able to do with Kristy Wolfe.
“That’s the beauty of community,” says Kristina. “Someone knows, and someone has been there, and somebody will help you through, which is what we’re hoping for with digital storytelling. It’s just creating that connection all the way through.”
Expanding impact and reach with digital storytelling
Heart Beats is looking forward to raising awareness for their work to ensure that as many families as possible receive the life-changing support of a community to lift them during challenging times.
“Sharing the knowledge and experience we have is so easy with a format like digital storytelling,” says Kristina. “We can share stories for kids and adults, and even the origins of Heart Beats. There are just so many places we could go with it.”
The organization looks forward to sharing the digital stories created with Kristy Wolfe and the connections these will help build with healthcare providers, families, and the community.
“What you put into a digital story becomes part of your legacy as an organization,” says Kristina. “It’s an opportunity to highlight the good we do, by focusing on patient engagement and sharing their stories.”
With a long list of potential new projects, Heart Beats is excited to keep working with Kristy Wolfe to help maximize their impact and grow their capacity to reach new families.
“These stories create a sense of community and cohesiveness that you won’t find in print or meetings,” says Kristina. “They’ll stay relevant for decades to come.”
Watch a digital story from the Heart Beats Retreat
“My hope is to share with other women and girls with Congenital Heart Disease your dreams can become a reality with support of your medical team” – Cheyenne
“My story is about my visit to a Cardiology lab. After I met Dr. John Tyberg in 2018 at a Libin Cardiovascular Fundraiser he invited me to his lab to see what they do there. It was an experience I’ll never forget. The cardiac team that day was testing how penicillin reacts to the heart of a pig – as pig hearts are very close to humans.” – Jacqui
“It’s hard enough being a teenager, but when you are in heart failure it can be even harder. With peers not understanding the gravity of the situation and calling me lucky it triggered me. ” – Maddie
“My digital story is about how my mom showed me how to live a fulfilling life while dealing with a chronic illness” – Sam
“My story is about getting the call for my heart transplant. I wanted to create a resource for future heart patients to know that someone has been through a similar experience.” – Vittorio
“My story is about how my mental health was impacted by my heart surgery and how I found connection with others like me at Heart Beats. ” – Julianne
The Heart Beats retreat was facilitated by Kristy Wolfe & Kristina McGuire, both Common Language Digital Storytelling trained facilitators, in partnership with Heart Beats Children’s Society of Calgary and funded by the Western Canadian Children’s Heart Network.
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