In June 2018, GeneticaLens teamed up with The Fearless Theater Company, an organization with the mission of brining young people with and without disabilities together to write, create, and perform original works for radio, television, and stage. The two companies worked with a crew of undergraduate film/TV students at NYU’s Tisch School, students from the Tisch school of Drama, and individuals with rare diseases to create an hour docudrama “What If,” about a media production lab at a university struggling to raise funding to create video natural histories of as many rare diseases as possible. The film includes scripted scenes performed by actors as well as documentary video footage from “The Angelman Project.”
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Clip From What If?
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Trailer for The Hope Scenarios
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The following summer, the collaboration continued with the creation of a web series, “The Hope Scenarios,” which documents the lives of two young women with rare disease: Epiphany and Sam. Epiphany, age 28, has sickle cell disease, a rare inherited blood disorder that causes intense pain and a range of serious complications. Sam, age 30, has familial dysautonomia, a genetic disorder which significantly impairs the functioning of the body’s autonomic nervous system, leading to impaired walking ability, feeding difficulties, irregular blood pressure, and a number of other problems. |
The web series combined interviews and round table discussions conducted in the studio, with footage following Sam and Epiphany in their daily lives at home, at work, and other locations. The series also included interviews with experts on familial dysautonomia and sickle cell disease, and advocates working to improve the lives of people with rare diseases.
Sam's Blood Pressure
Sam, who has familial dysautonomia, experiences a blood pressure swing during an interview. The clip also features commentary by Dr. Horacio Kaufmann, MD, Director of the Dysautonomia Center at New York University Langone Health. |
Epiphany and Dorothy
Epiphany has sickle cell disease, while Dorothy has bilateral hydronephrosis, among other conditions. The two close friends talk about how they have navigated discussing their medical problems with each other. |