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31-Jan-2019

Believe Limited and The Foundation for Art & Healing Survey Results Underscore the Importance of Connection and Community in Managing a Chronic Rare Disease

Believe Limited and The Foundation for Art & Healing Survey Results Underscore the Importance of Connection and Community in Managing a Chronic Rare Disease 'Hemophilia: The Musical' Participants and their Caregivers Surveyed to Assess Impact of First-of-its-Kind Workshop and Theatrical Production for Teens with a Bleeding Disorder

PR Newswire

LOS ANGELES and BROOKLINE, Mass., Jan. 31, 2019

LOS ANGELES and BROOKLINE, Mass., Jan. 31, 2019 /PRNewswire/ -- Believe Limited and The Foundation for Art & Healing today announced the results of a post-experience survey assessing the social and emotional impact of the Breaking Through! Musical Theater Intensive and 'Hemophilia: The Musical,' a first-of-its-kind theatrical production featuring 25 teens affected by chronic, rare bleeding disorders. The results are based on self-reported responses to a blinded survey completed by each of the 25 participants and their caregivers following the program. A three-month follow-up survey of all teen cast members and their caregivers will be conducted to assess whether the program has potential to provide enduring psychosocial benefits of community and connection long after its completion.

Initial post-program survey results showed:

  • 100 percent of cast members and 100 percent of caregivers reported improved confidence and motivation in managing all aspects of their bleeding disorder or improved confidence and motivation as a caregiver;
  • 92 percent of the students and approximately 88 percent of the caregivers reported feeling less stressed, isolated and lonely in life overall after participating in the program;
  • 100 percent of the cast members also agreed that they felt much more connected to others with a bleeding disorder and would be more likely to engage in the creative arts in the future.

"You could feel the emotion emanating from the stage as the cast members sang the lyrics of songs drawn from their personal experiences living with a bleeding disorder," said Patrick James Lynch, Believe Limited CEO and Breaking Through! Musical Theater Intensive director. "Through a shared creative process, the students united through song and together lay bare the issues and topics they contend with in their lives. The program may also help to build the next generation of community leaders with nearly 85 percent of cast members saying they would volunteer to bring a program like this to help others."

'Hemophilia: The Musical,' was performed before an audience of 150 family members, friends and members of the bleeding disorder community at New World Stages in New York City on November 12, 2018. The plot followed the story of high school students learning how to embrace who they are and follow their dreams, while living with a bleeding disorder as a teenager.

"I was surprised to learn more about the power of creative arts," wrote one of the students on the blinded survey. "It [the program] wasn't just singing. It wasn't just acting. We ate, breathed, painted, traveled, and most importantly, bonded." Another student said; "I still can't believe I was there with other kids like me sharing our lives. I will never forget this and will cherish it always."

In preparation for the performance, the students participated in a three-day Breaking Through! Musical Theater Intensive workshop that included 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 were exclusively sponsored by BioMarin Pharmaceutical Inc.

"The results from this survey validate the value of programs, such as 'Hemophilia: The Musical,' that provide an avenue of artistic expression for people living with a serious chronic disease," said Jeremy Nobel, M.D., Harvard Medical School faculty member, and founder and president of The Foundation for Art & Healing's UnLonely Project. "Increasingly, research shows that when people engage in creative pursuits with others, they are challenged to experience their feelings and their situations differently. As a result, often they are better able to communicate about their feelings, be better connected to themselves and others and find increased resilience in their daily lives."

"At BioMarin, we aspire to make a big impact on the lives of patients suffering from rare disease by developing innovative medicines that address their condition at its root. As we've gotten to know the rare disease community, we've come to appreciate that people see themselves as more than just their condition," said Hank Fuchs, M.D., President of Worldwide Research and Development at BioMarin. "So, when we have an opportunity to support organizations who are keen to help people with rare diseases live their lives to the fullest, we find natural alignment and joy in following their lead. Congratulations to the participants and families, and know that BioMarin continues to work hard to assess the safety and efficacy of a potentially transformative, investigative therapy for hemophilia."

For more information about 'Hemophilia: The Musical' and the Breaking Through! Musical Theater Intensive program, visit BreakingThroughHemophilia.com.

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.

About the UnLonely Project of The Foundation for Art & Healing
The UnLonely Project, an initiative of the non-profit Foundation for Art & Healing, works to address loneliness and social isolation as pressing personal and public health challenges through a variety of awareness raising, programmatic, and research activities. The UnLonely Project promotes creative expression as an innovative approach to reduce the burden of loneliness and social isolation for millions of Americans and around the Globe. To learn more about the UnLonely Project, visit www.unlonelyproject.org.  

 

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SOURCE Believe Limited; The Foundation for Art & Healing

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Last Updated: 31-Jan-2019