Sponsored by commercial gene therapy company Spark Therapeutics, the science fair will be held at the National Hemophilia Foundation’s 71st Bleeding Disorders Conference in Anaheim, California, Oct. 3–5.
“Traveling around the country producing educational programs and meeting families, we identified a growing hunger for an understanding of the science behind our bleeding disorders from community members of all ages,” Patrick James Lynch, Believe Limited’s founder and CEO, said in a news release.
A mix of old-school science fair and contemporary interactivity, the event will feature a variety of hosted visual and tactile exhibit modules developed in part by a scientific advisory panel of clinicians. In the future, the modules will be shared at scientific and community meetings. Additional ongoing educational content will be accessible at this site.
“This novel collaboration aims to spark the community’s curiosity to understand the underlying science of their disease, so they feel empowered to ask the right questions and make informed decisions related to their medical care,” said Katherine A. High, MD, president and head of Spark research and development.
In related news, Believe Limited has released its “Hemophilia: The Musical” soundtrack on multiple platforms. It also announced results of a post-production survey about the benefits of community and connection in managing disease.
The boutique agency produces educational and motivational digital content, live events, and podcasts for rare-disease communities, with a focus on hemophilia and bleeding disorders. Lynch directed “Bombardier Blood,” a new film about hemophiliac Chris Bombardier’s ascent of Mount Everest.
In observance of World Hemophilia Day (April 17), the agency released the six-song soundtrack from “Hemophilia” for downloading on Spotify, Pandora, and SoundCloud. Directed by Lynch, the theatrical production featured 25 teenagers affected by rare bleeding diseases, and was performed last fall in New York City. The soundtrack was based on their real-life experiences.
“Music is an incredible medium for self-expression,” Lynch said. “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.”
After the production, teen cast members and their caregivers were surveyed about the impact of the musical and the Breaking Through! Musical Theater Intensive program that produced it. The program included workshops on the effects of breathing and relaxation on pain management, and the psychosocial and therapeutic value of self-expression in the arts.
Response highlights included:
- All cast members reported feeling generally less isolated or lonely.
- About 95% of caregivers and 82% of cast members said the musical will have an enduring impact on their lives.
- Some 91% of caregivers said that attending the event helped them better understand the participant and their bleeding disorder.
In collaboration with regional bleeding disease advocacy chapters, the theater intensive will produce local workshops and performances in 10 cities across the U.S., starting in June.
As attendees enjoy Believe Limited’s science fair, the educational part of the bleeding disorders conference will feature information for patients’ partners and spouses, a conference on von Willebrand disease, and sessions about rare factor deficiencies, improving fusion techniques, and the basics of bleeding disorders. It will also include presentations for teens and young adults. Go here to register.
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