University of Utah Health
Print and Digital Publishing: Single or Special Issue
Gold
With immersive, multimedia storytelling, University of Utah Health tells the tale of spinal muscular atrophy (SMA) which, until recently, had been the top genetic killer of infants. Parents went from the joy of a newborn baby to losing their toddler before they were three years old. But in December 2016, gene therapy stopped SMA in its tracks. Infants who received those revolutionary treatments live life to the fullest at home, work, and play. Word, video, photography and graphics combine to create a visceral experience of the harsh truths of SMA and how advances in science and medicine have created a new reality.
What was the most impactful part of your entry?
Before we started on the project, everyone involved met to identify a unifying theme that we could plan for and collectively weave through the story’s writing, photography, videography, and design. Yes, it is a tale of life and death, but as a singular focal point, the theme seemed too one-dimensional and stark. Instead, we chose movement as a central theme.
Tragically, children with spinal muscular atrophy (SMA) lose the ability to move when the disease is not treated. When given gene therapy shortly after birth, kids can grow up to be kids. To show that, we incorporated play and rambunctiousness into the photography, which included innovating the Shorthand publication platform to incorporate a kinetic element to photos; transforming graphs from data points to children with varying abilities to move; the final photos and video depicts a little girl with SMA skiing—the act a triumph of medicine and freedom. Throughout the publication, movement signifies life and living, health, and joy.
What challenge did you overcome?
Our challenge was to respectfully tell the stories of children who died from SMA and those now living with it thanks to scientific advances. Both journeys are deeply personal. Writer spent hours with the families, earning their trust and documenting their complex stories. Building on that foundation, our photographers were able to capture intimate moments of joy and grief. We combined home photos and movies with our graphics and multimedia elements to create a captivating visual story that matched the powerful written narrative. All this was done in collaboration with the families, who had input and final approval. The families’ comments after publication showed that we were successful in honoring their stories. One wrote, “I want to express my love for you and all that you do.”
Contact:
Julie Kiefer
julie.kiefer@hsc.utah.edu