For the teens involved in the BioMarin-sponsored “Hemophilia the Musical” arts program, the show must go on in spite of COVID-19. That’s the message they’re sending on World Hemophilia Day Friday as they reunite remotely while sheltering in place.
The pandemic shut down the national program and in-person creative collaborations, so some of the teens worked together from home to create a socially distanced music video to celebrate the day and spread hope.
In personal videos and Zoom-room divided screens, the original cast of the first off-Broadway show share messages and sing “Today” from the “Breaking Through” musical in 2018. The song about the struggles of hemophilia can also apply to the isolation—and personal strength—that many people are feeling under COVID-19, said Patrick James Lynch, co-founder and CEO of Believe Limited, which runs the arts program and put the online performance together.
The pandemic hit just as the music program was gearing up for two educational and musical weekend events with 37 new cast members, set for April in Los Angeles and June in Chicago.
While it became clear quickly that the live events couldn’t happen, Lynch wasn’t ready to give up. Not only did he and his team get the original cast back together for an inspiring World Hemophilia Day celebration, but they’re also creating digital master classes for the new recruits who submitted auditions and were selected to be part of the Los Angeles and Chicago programs.
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Lynch, who has hemophilia A, co-founded Believe Limited to create educational and empowering arts programs for people affected by bleeding disorders
He’s philosophical about the temporary halt to live performances and events, and joked, “Welcome to the theater!” And there's a bright side to the delay, he said, in that the digital classes will give the new "Breaking Through" students and directors a chance to get to know each other more than they would have in just one weekend—and better prepare for that eventual live event.
“At the end of the day, the reason why we believe in and why we started this is to provide young people with bleeding disorders the opportunity to recognize community and therapeutic value in the arts,” Lynch said.
When BioMarin first began working with and sponsoring the "Breaking Through" arts program, it was developing a hemophilia gene therapy and wanted to introduce itself to the community with the unique sponsorship. Now, its hemophilia A drug valoctocogene roxaparvovec is currently set for an August FDA decision and could become the first gene therapy approved for hemophilia.