BioMarin pairs with The Moth to bring the art of storytelling to hemophilia

Hemophilia patient Vanessa Flora tells her story during the BioMarin-sponsored storytelling session at a national hemophilia conference. (BioMarin)

How do you top an off-Broadway musical written and performed by teens with hemophilia? Well, you don’t, exactly. But for BioMarin, the successful collaboration with Believe Limited last year reinforced the value of arts programs for its patient populations.

So the California company, which is developing a hemophilia A gene therapy it's expecting to submit to the FDA by year's end, decided to do another one, this time for an older audience. Brainstorming sessions culminated in the idea of patient storytelling. And, as Believe co-founder and creative director Ryan Gielen explained, several people on the team immediately said, “Hey, we should do something like The Moth.”

Gielen called The Moth, a nonprofit group dedicated to the art of storytelling, and it agreed to work on the show. Not only did The Moth guide the structure of the event and lend its brand name, but its professionals also worked with the hemophilia patients to apply The Moth's process and really develop their stories, Gielen said.

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RELATED: Hemophilia, the musical: BioMarin sponsors one-of-a-kind performance created by teens

The Moth tells people, “If you’re going to be a storyteller, you need to be honest, you need to be brave and you need to have wit. The honesty and bravery part really resonated with us," Debra Charlesworth, BioMarin's vice president of corporate communications, said.

“It honors an individual’s experience, but what also happens at Moth programs is the sort of universality to storytelling. Even though people were up there talking about their hemophilia, people without hemophilia could connect and relate to them," she added.

BioMarin and Believe enlisted three very different people with hemophilia to talk about their lives: Ivan, a 33-year-old Los Angeles dad and former gang member; Tyshawn, a 27-year-old from Brooklyn; and Vanessa, a 40-year-old mom who’s had trouble convincing people a girl-now-woman can have hemophilia. They first presented their stories on stage at the National Hemophilia Bleeding Disorder Conference.

RELATED: BioMarin drops lower dose of its hemophilia gene therapy as it eyes submissions by year-end

Their stories also form the first podcast from Believe, called "BloodStream Journeys" and sponsored by BioMarin. While the hemophilia storytelling evening will be the initial episode when the channel debuts next month, future audio shows will feature people of all ages living with many different kinds of blood disorders.

The podcast series continues the arts connection that both BioMarin and Believe point to as not only positive expressive outlets for people with chronic diseases but also as a way to improve health outcomes.

“There’s a growing body of evidence that supports our thesis that if young people especially can improve in self-expression, there is tremendous therapeutic value. It isn’t just the release of stress, it’s a deeper connection to peers, to community and really important, a deeper connection to your disease state or your challenge,” Gielen said.

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