The Foundation for Art & Healing Follow-Up Survey Shows Persistent Psychosocial Benefits of Community and Connection in Managing a Chronic Rare Disease
The Foundation for Art & Healing Follow-Up Survey Shows Persistent Psychosocial Benefits of Community and Connection in Managing a Chronic Rare Disease
LOS ANGELES and BROOKLINE, Mass., April 17, 2019 /PRNewswire/ -- On World Hemophilia Day, Believe Limited debuted the six-song original soundtrack from ‘Hemophilia: The Musical,’ a first-of-its-kind theatrical production featuring 25 teens affected by chronic, rare bleeding disorders. The soundtrack is now available for download on Spotify, Pandora and SoundCloud.
In 2019, the Breaking Through! Musical Theater Intensive program will produce local workshops and performances in 10 cities across the United States, beginning in June. The programs will be coordinated with regional bleeding disorder advocacy chapters and will take place at each chapter’s local family day or annual conference.
“Music is an incredible medium for self-expression. This six-song, original soundtrack conveys the experiences of teens living with a chronic, rare disease in a way that has never been done before,” said Patrick James Lynch, Believe Limited CEO and Breaking Through! Musical Theater Intensive director. “We are excited to both share this soundtrack on World Hemophilia Day and launch local programs in 10 U.S. cities as a way to recognize and celebrate the bleeding disorders community.”
The soundtrack from ‘Hemophilia: The Musical,’ performed at New World Stages in New York City on November 12, 2018, was written and based on the real-life experiences of the 25 teen cast members. Drawing from essays the students submitted during the application process, the storyline and music followed high school students learning how to embrace who they are and follow their dreams, while living with a bleeding disorder.
Today, Believe Limited and The Foundation for Art & Healing also unveiled results from a four-and-half-month, post-event survey of all teen cast members and their caregivers assessing the continued impact of ‘Hemophilia: The Musical’ and the Breaking Through! Musical Theater Intensive. The Theater Intensive included workshops 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.
Highlights from the self-reported responses to the blinded follow-up survey included:
- 100% of cast members reported feeling less isolation or loneliness in life overall, reflecting an 8% increase over the initial post-program survey results;
- Approximately 95% of caregivers and 82% of cast members said that the musical made a lasting positive impact on their lives and that they maintain ongoing contact with the friends they made at the event;
- 91% of caregivers reported that they understand the participant and their bleeding disorder better since attending the event.
“At 4.5 months post-event, the survey also showed 100% of the cast members reported feeling less isolation or loneliness in life overall and 100% of participants, including caregivers, continued to report that they would recommend this kind of experience to others,” said Jeremy Nobel, M.D., Harvard Medical School faculty member, and founder and president of The Foundation for Art & Healing’s UnLonely Project. “Rare, chronic diseases, such as a bleeding disorder, can lead to a sense of being on the outside and difficulty in connecting with others. These survey results drive home the positive impact that the creative arts can have in helping people to express themselves and feel a sense of belonging.”
The Breaking Through! Musical Theater Intensive program, as well as ‘Hemophilia: The Musical,’ is sponsored exclusively by BioMarin Pharmaceutical Inc. The next national, Broadway-style, bi-annual program and performance in New York City is planned to be held in 2020.
“BioMarin is proud to continue our support of this important program and its rollout in local communities in 2019,” said Hank Fuchs, M.D., President of Worldwide Research and Development at BioMarin. “We understand that living with a bleeding disorder involves far more than managing physical symptoms, and BioMarin remains committed to both advancing treatment for hemophilia and to supporting the community with programs that offer holistic support and empowerment.”
To listen to the soundtrack, visit Spotify, Pandora and SoundCloud. For more information about ‘Hemophilia: The Musical’ and the Breaking Through! Musical Theater Intensive program, visit www.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.
View original content:SOURCE Believe Limited; The Foundation for Art & Healing
