The Hope Scenarios

Link to Series Coming Soon

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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. 
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Crew and participants in the Hope Scenarios, from left to right: Kaylee Scinto (camera assistant,) Michelle Schwab (Sam's health aide,) Sam Myers (participant,) Louise Tiranoff (director,) Lynne McVeigh (producer), Epiphany Samuels (participant)

Sam Myers, who has familial dsyautonomia, is the subject of Season 1.

Epiphany Samuels is a sickle cell warrior, and the subject of Season 2.

​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.

Dr. Horacio Kaufmann, the director of the Dysautonomia Center at NYU Langone Hospital Center.

Dr. Lucy Norcliffe-Kaufmann, the associate director of the Dysautonomia Center.

​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. 
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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.

Ginger Davis, an advocate for the Sickle Cell Thalassemia Patients Network, sitting next to Epiphany Samuels.

Epiphany with her father, Attol.

Sam and her physical therapist, Wen K. Ling, PhD., an Associate Professor of Physical Therapy, and Chair of the Department of Physical Therapy at New York University.

Epiphany walks down the street with her friend, Dorothy.

Sam hanging out with her aide Emily, and friends Keshi and Amanda.

A group of activists, including (from left to right on the bottom row) Dr. Thomas Moulton, Epiphany Samuels, Ginger Davis, and Gloria Rochester, speak on the steps of New York City Hall, advocating to increase public funding for sickle cell treatment centers.