The Hope Scenarios: Focusing the Lens on Rare Diseases

Click here to meet the participants and crew of "The Hope Scenarios: Focusing the Lens on Rare Diseases"
Click to meet the participants and crew of “The Hope Scenarios: Focusing the Lens on Rare Diseases”

The Hope Scenarios: Focusing the Lens on Rare Diseases is a web series created by the Fearless Theater Company, Ltd., as part of a five-week workshop filmed at New York University’s Tisch School of the Arts and on locations across New York City as the camera crew followed Samantha (Sam), who has familial dysautonomia (FD), and who is an advocate for others with FD and Epiphany, a Director/Actress who has sickle cell disease, an inherited blood disorder that can cause intense pain and a wide variety of complications.

Produced by Professor Lynne McVeigh and directed by Louise Tiranoff, the series features members of the Fearless Theater Company, working with alums of Undergraduate Film and Television (UGFTV), at Tisch.  Rare disease clinicians and researchers and people with rare diseases and their families, played key roles in the production.

Each episode explores wide-ranging topics such as the disease’s symptoms, the support networks Sam and Epiphany rely on, the community organizations and advocacy groups that support research and treatment for rare disorders, and much more. Epiphany demonstrates how she asserts herself with a director asking her to participate in an onstage sword fight, a scene that would compromise her health and wellbeing. Sam deals with extreme swings in blood pressure.

The show also features a glimpse into how researchers at the Dysautonomia Center at NYU Langone Hospital Center, directed by Horatio Kaufmann and Lucy Norcliffe-Kaufmann, are creating a natural history study of familial dysautonomia and how they use photography to show how FD causes changes over time in their patients. Faye Ginsberg, David Kriser Professor of Anthropology, and Founder/Director of the Center for Media, Culture and History, as well as the President of the Dysautonomia Foundation, Inc., provides narration about the complexities of FD, helping viewers understand the reasons behind the challenges of FD and how Sam makes her life work, even in the face of sometimes almost insurmountable challenges. And Dr. Ginsberg knows whereof she speaks as she is Sam’s mother.

In season two, we meet three advocates fighting alongside Epiphany for the voices of people with sickle cell disease to be heard, and for their condition to receive the attention and funding it deserves. Gloria Rochester, the founder of the Queens Sickle Cell Advocacy Network, Cassandra Dobson, a professor of nursing at Lehman College, and Ginger Davis, an advocate for the Sickle Cell Thalassemia Patients Network, all are working to push the government to fund much needed sickle cell treatment clinics that could improve care for a disease community that often feels neglected and underserved.