ABOUT THE FILM
For decades, families with undiagnosed genetic diseases went from specialist to specialist as they searched in vain for answers. Now, thanks to DNA sequencing, it’s possible to read the more than 20,000 genes in the human genome at once and to begin to find those answers. But what do they mean? How do they affect they way these families care for their children (and each other) and imagine their futures? Do they inspire hope or despair? RAREFIED chronicles the difficult, unexpected and moving journeys of ten such families and explores both the power and limits of genetic knowledge.
In 2014, Sara Katsanis, working with the Task Force for Neonatal Genomics at Duke University, began working with filmmaker and video ethnographer Wil Weldon on compiling photos and videos to tell the stories of families with rare genetic diseases. We began with audio recorders, intending to allow the families to tell their own stories. When it was apparent that caring for the children and living their own lives did not allow much time for audio recording, video interviews were begun. GeneDx, a genetic sequencing lab, in conjunction with Sherri Bale, generously agreed to fund most of the larger undertaking.
Over the following two years, Weldon visited with each family for varying lengths of time to collect their stories. Working closely with the Task Force and conforming to HIPAA laws, the intent remained to allow the families to tell their own stories as much as possible. The film's editing was completed in January 2016.
Families and individuals profiled: Amanda and Matt Cobb (John-Raven and William), Carrianne and Joel Cocker (Camden), Shelly and Travis King (Gabriel), Sandra and Rich Sermone (Tony), Laura and Kevin Buchanan (Fletcher), Kate and Richard Davis (Ann Robertson), Marianna Pinner (Weatherly), Rebecca and Jude Tallman (Mason), Alma Fuentes-Gomez and Pedro Gomez (), Elizabeth Davis.