Twenty-five high school students from across the U.S. will participate in Hemophilia: The Musical, a first-of-its-kind theatrical production written and informed by their unique experiences of life as a young person with a bleeding disorder. The musical will take place at New World Stages on November 12, 2018 at 1 pm ET. A live stream of the performance will be made available at BreakingThroughHemophilia.com.
Prior to the performance, students will first participate in the ‘Breaking Through!’ Musical Theater Intensive, a three-day workshop that includes coaching sessions on the impact of breathing and relaxation on pain management, as well as the psychosocial benefits and therapeutic value of self-expression in the arts. The musical theater intensive and performance are produced in partnership with the Los Angeles-based Believe Limited to help empower the bleeding disorder community through the power of music, performance and the arts.
“Young adults with bleeding disorders need a creative outlet that allows them to express what they are thinking or feeling, and specifically showcase how their lives are impacted,” said Patrick James Lynch, Believe Limited CEO and ‘Breaking Through!’ director. “We were blown away by the talent and thoughtfulness of the applicants. We applaud BioMarin for helping these teens bring their stories and talent to life as we also introduce them to just how beneficial the arts can be for young people affected by chronic illness!”
The twenty-five high school students selected have either hemophilia or another bleeding disorder, are genetic carriers of a bleeding disorder, or are a sibling or child of someone with a bleeding disorder. The participants selected for the 2018 production of ‘Hemophilia: The Musical’ are:
- Carson McCabe – Arvada, CO
- Kailea Whatley – Stone Mountain, GA
- Jacob Hoernlein – Monroe, NC
- Lillian Omerso – New Albany, IN
- Natalie Rubin – Tampa, FL
- William B – Bronxville, NY
- Emma Gould – Agoura Hills, CA
- Turtle Leach – Rigby, ID
- Elijah Eke – Louisville, KY
- Dominic Fernandez – Lebanon, OR
- Porus Pavri – Allendale, NJ
- Karissa Willette – Pulaski, WI
- Patrick Zeppieri – Davenport, FL
- Khalil Dance – Fort Wayne, IN
- Samson Sperry – Cottonwood Heights, UT
- Irina Floyd – Kapaa, HI
- Zak Stengel – New York City, NY
- JonCarlos Ley – Baltimore, MD
- Elijah Johnson – Akron, OH
- Colin Orth – Chippewa Falls, WI
- Nathan Mermilliod – Riverside, CA
- Destini Sharp – Phelan, CA
- Kaytrien Hall – Casco, ME
- Trent Clayton – Westchester, PA
- Hannah James – Prairieville, LA
“Research has shown us time and again that creative expression and the arts can have a positive and lasting impact on the emotions, attitudes and beliefs of people with health disorders, contributing to greater health and wellness for those individuals,” said Jeremy Nobel, M.D., Harvard Medical School faculty member, and founder and president of The Foundation of Art & Healing and UnLonely Project. “Programs like ‘Breaking Through!’ and productions like ‘Hemophilia: The Musical’ provide a unique and important opportunity for these young adults to communicate their unique experiences in a collaborative and creative environment.”
“We are proud to sponsor this pioneering program for teens that provides an unexpected creative outlet to young people with bleeding disorders and can contribute to well-being,” said Hank Fuchs, M.D., President of Worldwide Research and Development at BioMarin. “We are thrilled to be a part in sharing this first-of-its-kind workshop and performance. Our hope is that this program will reach beyond the teens performing in the musical and provide learnings for the broader community on the connection between artistic expression and wellness.”
BioMarin announced the ‘Breaking Through!’ Musical Theater Intensive on July 9, 2018 and accepted applications through September 1, 2018. Learn more about the workshop at: BreakingThroughHemophilia.com.
About Hemophilia A
Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. Although it is passed down from parents to children, about 1/3 of cases are caused by a spontaneous mutation, a new mutation that was not inherited. Approximately 1 in 10,000 people is born with Hemophilia A. People living with the disease are not able to form blood clots efficiently and are at risk for excessive bleeding from modest injuries, potentially endangering their lives. People with severe hemophilia often bleed spontaneously into their muscles or joints. The standard of care for the 43 percent of individuals with hemophilia A who are severely affected is a prophylactic regimen of Factor VIII infusions two to three times per week. Even with prophylactic regimens, many people still experience spontaneous bleeding events that result in progressive and debilitating joint damage.
About Believe Limited
Believe Limited is an award-winning boutique agency focused on creating educational, inspirational and deeply impactful digital content, live events, podcasts and more for rare disease communities, with a deeply-rooted focus in hemophilia and bleeding disorders. Our work has been honored by the National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA) and the WEBBYs. To learn more about our content and programming, please visit www.BelieveLTD.com.
BioMarin is a global biotechnology company that develops and commercializes innovative therapies for people with serious and life-threatening rare disorders. The company’s portfolio consists of seven commercialized products and multiple clinical and pre-clinical product candidates. BioMarin is researching a gene therapy candidate for Hemophilia A in multiple ongoing clinical trials.
For additional information, please visit www.BMRN.com. Information on BioMarin’s website is not incorporated by reference into this press release.