How a Rare Disease Community Found Its Voice
“For ten years, no one could explain my daughter’s symptoms.”
Producer Tina Babarovic spent more than a decade navigating a maze of specialists, tests, and unanswered questions. When a diagnosis of Kabuki syndrome finally arrived, it also led her to the Kabuki Syndrome Foundation.
There she met the foundation’s president, Janet Lee. Before anything else, they were two mothers talking about children, families, and the long search for answers that comes with a rare disease.
That conversation eventually turned to how their skills could help move the foundation forward.
Tina began using her experience as a journalist and producer to support the foundation’s work—raising awareness and helping shape how the story was told.
The work was shaped by the people living with the condition—and the physicians working to treat it: families describing daily life, doctors explaining what researchers were beginning to understand, and scientists outlining the long path toward clinical trials and new treatments.
Kabuki Syndrome Foundation — 2025 Gala Film
Tina knew what mattered — and how to shape it.
Her personal experience meant she understood the uncertainty families carry, while her instincts as a producer helped shape those conversations into something others could follow.
The process depended on patience and quiet persistence — giving families space to speak when they were ready and recognizing the moments that revealed something deeper.
“StorySquad has an incredible ability to translate the lived experience of Kabuki syndrome into powerful, authentic storytelling. They not only captured the challenges our families face, but also the urgency and hope behind the Kabuki Syndrome Foundation’s mission to drive research forward. Their partnership elevated our gala program and helped us connect with our community in a deeply meaningful way.”
Keeping things small.
Filming was designed to remain as unobtrusive as possible. Small crews and lightweight cameras allowed time to be spent with families before interviews began so children could grow comfortable with the presence of a camera.
Some filming took place in clinical environments as well, including sessions at Baltimore’s Kennedy Krieger Institute where children undergo neurological testing. In those settings, privacy and sensitivity shaped what was — and wasn’t — recorded.
Interviews required another kind of care.
Physicians and researchers were describing complex medical ideas, and part of the work was guiding those conversations away from clinical language toward something families and donors could understand.
Kabuki Syndrome Foundation — Research
The Challenges of Kabuki Syndrome
The story didn’t end in the room.
The response was immediate.
As Mackay Gunn, the foundation’s Director of Development, later shared, “the video received rave reviews that evening and helped raise more than $620,000 for the foundation’s work.”
The films continue to live beyond the event, helping connect families, researchers, and supporters who share the same hope for progress.