Back in 2010, we shot a video about a project to find a stem cell-based therapy for Huntington’s disease. In addition to scientists at UC Davis, the video featured patient advocate Chris Furbee, who has a family history of Huntington’s: he lost his great grandmother, grandfather, aunt and mother to the incurable disease. Chris himself tested positive for the mutant gene that causes the disease in 1996. You can watch that video here.
During our interview with Chris, I learned he was a film buff too and had been working on a documentary, Huntington’s Dance, about his family’s experience with Huntington’s. Here’s how he describes the film:
This film is about my mother, Huntington’s disease and how the knowledge that I was at risk for the disease has profoundly affected my life.
Chris has been working on the film since 1995 and is now ever so close to completing the project. To help get past the last few hurdles, which include sound mixing, producing DVD copies, and distributing the film, Chris has started a fundraising campaign on the crowdfunding website Indie-a-go-go. As Chris says on the his funding page, the impact of the movie could be profound:
Since I was 18 years old I have been raising money for advancing research and education of Huntington’s disease. This film will put a face to Huntington’s and by doing so will generate conversation among the general public that will result in improved care and treatment of those with Huntington’s, and most of all facilitate finding a cure to eradicate the disease throughout the world.
Having talked with Chris about the project it’s exciting to see that he’s so close the finishing. Huntington’s is a devastating disease, but isn’t one that’s widely known. The video will put a face on the disease and help people understand the need for better therapies.
There’s more about CIRM’s projects to find a cure for Huntington’s on our Huntington’s disease fact sheet.