The Hope Scenarios
Beginning in 2018 with the production of What If, an hour long docudrama about a team of scientists developing a video platform to document the unseen lives of people with rare diseases, and continuing with the creation of a documentary web series called The Hope Scenarios: Focusing the Lens on Rare Diseases, GeneticaLens is collaborating with the Fearless Theater Company and New York University's Tisch School of the Arts to produce films and shows that shed light on the challenges faced by individuals living with rare diseases.
The first season of the web series features Samantha, who has familial dysautonomia (FD), and who is an advocate for others with FD. Season 2 focuses on Epiphany, a Director/Actress who has sickle cell disease, an inherited blood disorder that can cause intense pain and a wide variety of complications. Each episode explores wide-ranging topics such as 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.
The show also features a glimpse into how researchers at the Dysautonomia Center at NYU Langone Hospital Center, directed by Horatio Kaufmann, MD, and Lucy Norcliffe-Kaufmann, Ph.D, are creating a natural history study of familial dysautonomia. Sam’s mother, Faye Ginsberg, PhD, David Kriser Professor of Anthropology, 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. Wen K. Ling, PhD, Chair & Associate Professor of Physical Therapy at NYU, presents an episode in which she works with Sam on physical therapy, sharing her approach and intervention methods for patients with neuromuscular disorders.
For sickle cell disease, viewers 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, are all working to raise funding for much needed sickle cell treatment clinics that could improve care for a disease community that often feels neglected and misunderstood.