‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28

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by Shayna Korol |

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“Rare” film campaign | Epidermolysis Bullosa News | money being raised

A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families.

Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter. The project will only receive this funding if the campaign reaches its goal by Oct. 28 at 8:00 am EDT.

“Rare,” a feature-length film, provides a “glimpse into the world of rare diseases and the unsung heroes that are pushing for medical breakthroughs,” Kickstarter stated on its campaign page.

“This is a story about reframing adversity, about the importance of patient advocacy, and about attempting to achieve the seemingly impossible,” it continued.

“We’ve got some great characters who are leaders in their fields, and we’re featuring the diseases they happen to be leading. They are changing the course of the face of medicine,” Areeg Sweis, one of the filmmakers, said in a press release.

Sweis was inspired to make the documentary after reconnecting with a friend, Jessica Klein-Foglio. Before becoming a rare disease advocate, Klein-Foglio was a professional opera singer, performing with the New York Philharmonic and as a principal artist with the New York City Opera.

Her career came to an end when her son Ben was diagnosed with Salla disease, an ultra-rare neurodegenerative disorder with fewer than 10 reported cases in the U.S. and about 140 cases worldwide.

Jessica and her husband, Michael Foglio, struggled to find information about the disease, and were inspired to create the Salla Treatment and Research (STAR) Foundation to support research into Ben’s disorder.

“It was all fortuitous timing,” Sweis said. “I was searching for a project, and when we reconnected, I was completely inspired by her story.”

The documentary, which to date has been funded by those involved in it, features several researchers alongside the Foglios and other families as they navigate life with a rare disorder. “Rare” shows firsthand the journey from diagnosis to treatment, the power of community, and the belief that everyone can make a difference.

“Rare” is dedicated to all the families affected by rare diseases, and aims to bring greater awareness to them. Of the roughly 7,000 known rare diseases, only 5% have a U.S. Food and Drug Administration (FDA)-approved treatment, so that an estimated 28.5 million of the 30 million Americans living with a rare disease do not have access to a disease-targeted treatment.

“Expand this to the entire world, and that number grows to roughly 300 million — making this one of the most significant health challenges of our time,” the release stated. 

“It is true that people who have rare diseases are, to a certain extent, abandoned by the medical profession; not intentionally, but because there isn’t enough knowledge to convey and to use as a basis for treatments,” William Gahl, MD, PhD, a geneticist with the National Institutes of Health (NIH), said in the “Rare” trailer.

Gahl, clinical director of the National Human Genome Research Institute at the NIH, is one of the medical professionals featured in the documentary. Others include Steven Walkley, PhD, of Albert Einstein College of Medicine, and Melissa Wasserstein, MD, with The Children’s Hospital at Montefiore.

While the project focuses on rare diseases, it also aims to appeal to the general public by connecting to universal themes such as family and community. The film “is a story about overcoming obstacles,” Sweis said.

There are a number of ways to support “Rare” and its crowdfunding campaign. Those interested can make a contribution without a reward “just because it speaks to you,” or choose to receive acknowledgements or gifts for contributions of $10 or more, like a “rare” T-shirt for a $35 contribution or a DVD pack of award-winning documentaries for $100.

For more information about the film, visit www.ararefilm.com or follow @ararefilm on Twitter, Instagram, and Facebook.