During the summer of 2018, the Fearless Theater Company embarked on a new project: “What if?” –a docudrama centering on a team of scientists and media producers who developed a new video platform to document the unseen lives of people with rare diseases, such as Angelman syndrome (AS)–a very rare speech impairment disorder in which individuals may be able to speak only a few word, or make sounds.
“What if?” is the first episode installment for a future series called ‘The Hope Scenarios’ which is based on the true stories of individuals and families facing a rare disease, as well as the researchers and clinicians who are in search of treatments and cures. There are over 7,000+ rare diseases – involving 30 million people in the US alone – and yet most of these individuals live in an invisible world.
By educating others about the issues and challenges of these rare diseases, ‘The Hope Scenarios’ helps to erase misunderstandings and stigmas about people with rare disabilities, making their stories more real and accessible to families, parents, researchers and clinicians. This first episode focuses on the follow-up with the participants of the Angelman Project, a project that began in 1995 and was instrumental in logging over 350 hours of film footage of 72 Angelman subjects, their families, and healthcare and educational specialists in both the US and England.
At Fearless Theatre, we believe representation matters. When we never see individuals with disabilities portrayed in the media (or if they are shown, they are frequently shown as stereotypes), that stigmatizes society’s understanding of disability. Through the power of film, theater and media, Fearless Theater brings young people with and without disabilities together to perform, giving individuals with disabilities the chance to explore their feelings and share their stories in a safe environment.
You can watch our PSA about the importance of rare disease research below:
What If follows the story of Troy, a 26-year-old who has Angelman’s Syndrome. Watch Troy’s brother, Trent, talk about his brother.