In May 2017, Pope Francis met with a group of Huntington’s disease patients and their families from around the world. Now, Roche’s Genentech is backing a documentary film chronicling the poignant experience.
“Dancing at the Vatican” recently premiered at the Silver Screen Theater in Hollywood and will be shown again in the fall in Washington, D.C., and London, with future screenings in the works for Rome, Glasgow, Buenos Aires and Tokyo, according to Charles Sabine, one of the event organizers and the writer for the movie. He is a former Emmy-award winning NBC reporter who, after 26 years in TV journalism, became an advocate for the Huntington’s community. He is also from a Huntington’s family—his father and brother have the disease, and Sabine himself has the Huntington’s gene.
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Roche’s Genentech is developing Huntington’s disease therapy RG6042 and is now enrolling for phase 3 trials. Earlier trials have shown positive results in reducing the production of a mutant protein that underpins the disease.
A Genentech spokesman said the pharma is sponsoring the distribution of “Dancing at the Vatican” and helping promote the film. He said Genentech is in a listening and learning phase in regard to Huntington’s disease, and the sponsorship is meant to support the community and the partnerships it has built as well as raise awareness and demystify the disease.
The film tracks the struggles and journey of some of the 150 patients from 28 countries, including several South American families. Some of the world’s highest concentrations of Huntington’s disease are found in parts of South America, and researchers first identified the gene that causes Huntington’s in 1993 by studying families in Lake Maracaibo, Venezuela. One of the families featured in the movie, the Soto Sotos, are from that area.
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“Such is the shame and the stigma that surrounds Huntington’s disease that astonishingly no world leader had said the words ‘Huntington’s disease’ on a public stage. Let alone met a patient,” Sabine said.
The film is meant “raise the profile of the disease so people hear about it, and it gives the communities, the families and those involved in that area—now in Los Angeles—the opportunity to come and celebrate a happy story around Huntington’s disease,” he said. “It is a wonderful illustration of the goodness that can come out of what many people talk about as the most awful disease known to mankind.”
