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

BioMarin and Believe Limited launched the Breaking Through performing arts initiative for high schoolers with bleeding disorders. (BioMarin)

High schoolers across the U.S. are vying to participate in the first-ever musical about bleeding disorders. The BioMarin-sponsored show will be created and performed in the Big Apple later this year by aspiring musically minded teens who also happen to have bleeding disorders.

The three-day November workshop, run by Believe Limited and dubbed "Breaking Through!", will involve preparing, practicing and performing an original six-song musical about life with a bleeding disorder. Professional composers and lyricists will guide the 25 chosen students, as will trained facilitators and therapists, who will conduct breakout sessions on subjects such as breathing and relaxation for pain management and the psychosocial benefits of communication and self-expression in the arts. Interested teens, as well as siblings, can apply online at breakingthroughhemophilia.com through Sept. 1.

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“Believe Limited and BioMarin have a shared appreciation that theater and the arts in general can benefit young people with bleeding disorders, and frankly young people in general. But the psycho-social emotional support and growth available through the arts is what we wanted to emphasize for this population,” Believe Limited CEO Patrick James Lynch said.

While advances in treatment and disease management do allow some teens with bleeding disorders to play sports, it’s still not appropriate for everyone. Yet extra-circular activities are important for teens as an opportunity to connect, socialize, collaborate and push themselves, Lynch said.

He knows that value from personal experience with his own severe hemophilia A. He also lost his brother to hemophilia and he said he used the arts to help him understand and process the event. Lynch co-founded Believe Limited with a focus on creating “engaging, educational and empowering digital content and live events for people affected by bleeding disorders.”

The 20 “Breaking Through” high school teens and five siblings will be recorded throughout the process with material then turned into educational and inspirational videos and shorts to be distributed more broadly. The show’s musical director, Paul Russell, has experience with the community as the vocal coach and director of the U.K. Haemophilia Society choir.

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Lynch credited BioMarin’s experience in rare disease and its thinking around the patient experience as the most important part of living with a rare disease as unique and fitting for the project.

“What makes BioMarin different is they weren’t scared about doing something that was a little different. A lot of times companies are new and they want to launch a program that adds value outside the medicine, but they’re seeking precedent and they don’t want to do anything that would get them in trouble. And that’s to be understood. BioMarin isn’t behaving recklessly, of course, but there’s an openness to innovation. They’re not operating from a place of fear or are interested in what do companies usually do,” he said.