On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone to affectionate names like “honey.”
She was cheerful from the second we got in touch earlier this year. When we started talking about her role with the CRN, you could hear her smiling from 200 miles away:
“My husband is the current president of the CRN. I said, ‘Honey, what can I do to help [the organization]?’ He told me, ‘Find a way to unite the worldwide cystinosis community.’ I think he might have been joking, but I took him seriously!”
She laughs as she relates the story now, but that goal led to some of the CRN’s most creative pursuits.
Two years ago, Larimore headed a successful art exhibit, which brought together 108 artists living with cystinosis from all around the world. One of these artists happened to be Kevin McCalla, a comic book creator from Texas.
“He sent me the first four pages of the comic he wanted to create, and I went wild,” Larimore explained. You can tell she means it. Even all this time later, Larimore sounds as excited about the comic as she was in the midst of the exhibition.
The difference is that now, the comic is no longer a mere four pages.
In the summer of 2015, Larimore approached McCalla with an idea: What if they got a grant to continue the comic? Turned it into whole book? One completely about life with cystinosis?
Over a year into the project. McCalla’s not only gotten the grant and completed his comic, but he’s seen the Super Cysteamine Team distributed globally for free by the CRN.
That first book is an allegorical tale about the importance of compliance, told through the battle of costumed heroes in the body. It was written with a younger audience in mind, but parents, teenagers, and medical professionals across all continents (sans Antarctica) have welcomed the comic with open arms. The response has been so overwhelmingly positive that McCalla has inked out a three book deal in partnership with the CRN and Sigma Tau Pharmaceuticals.
This was all shocking for McCalla. Though he’s got a degree in Studio Art and has been drawing since childhood, he admits the response to his comic was unexpected: “I’m still not sure how to cope with getting attention for my work.”
“He’s shy,” Larimore said, “but his creativity is amazing.”
Readers agree. Having dealt with transplants, medications, and all the social aspects that come with a cystinosis diagnosis himself, McCalla approaches his work with a full understanding of the condition. However, unlike a pamphlet at the doctor’s office, he captures all of this in a fun way.
“There’s a lot of negativity around having a disease,” he said. “so it’s important to make that positive in a way.”
McCalla uses his own experience of growing up with cystinosis to fuel his series. The first book draws on childhood, while the second (without spoiling anything) will cover adolescence. His final book in the series will be geared more toward adults.
When asked whether cystinosis had ever featured into his artwork before, McCalla said that it hadn’t before that original art exhibit.
“I didn’t want to my disease to define me for anything, but it became more clear to me that I had to get more involved [in the community].”
Seeing the response to his work—especially from children—makes taking that leap well worth it, both from McCalla’s point of view and from Larimore’s. “We weren’t expecting it to reach all corners of the earth,” she said, “but it’s wonderful for him as an artist and for us to raise awareness.”
Together, McCalla and Larimore have taken one giant step toward her original dream of uniting the worldwide cystinosis community.
For anyone interested in uniting in that goal, you’re not alone. Join people globally in reading another take on cystinosis.
Sign up here to receive your own copy of the Super Cysteamine Team trilogy. The series is free and the CRN covers all shipping costs, including internationally.