Sweis Entertainment in collaboration with Digital Cave Media will launch crowdfunding campaign on September 28, 2021, to raise $45,000 for the upcoming documentary “Rare.”
The film follows families as they cope with the reality and day-to-day struggles and triumphs of living with a family member with a rare disease.
Today, there are 7,000 known rare diseases, yet only 5% have an approved treatment by the FDA. This means that of the 30 million people in America living with a rare disease, 28.5 million of them don’t have a 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 concept for “Rare” was spurred when Filmmaker Areeg Sweis reconnected with an old friend, Jessica Klein-Foglio. Before dedicating her life to fighting rare diseases, Klein-Foglio, a graduate of Julliard School of Music, had performed with the New York Philharmonic and was a principal artist with the New York City Opera. However, discovering that her second son was diagnosed with Salla disease brought her career to an inevitable end. With fewer than 10 reported cases in the United States — and barely 130 more worldwide—little information was found. Thus, the STAR (Salla Treatment and Research) Foundation was born.
A group of leading scientists, including Dr. Melissa Wasserstein of The Children’s Hospital at Montefiore, Dr. Steven Walkley of Albert Einstein College of Medicine, and Dr. William Gahl of the National Institutes of Health (NIH), joined forces to spur new research.
“It was all fortuitous timing. I was searching for a project, and when we reconnected, I was completely inspired by her story,” said Sweis. “I called [Director Nick Kovacic], and he jumped right on board. It was amazing how everyone so quickly jumped on the project, including the NIH.”
In the film, several doctors, including Dr. William Gahl, are featured along with the Foglio family and other families as they cope with the challenges of living with a rare disease.
“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,” said Sweis.
Rare diseases touch the lives of every community throughout the world, and still little is known about the history of their origins or what’s being done for them to this day. Told through interwoven storylines, “Rare” offers first-hand accounts of what it takes to go from diagnosis to treatment, the power of communities coming together, and the increasing belief that anyone can make a difference.
“This is a story about overcoming obstacles. The rare disease is the vehicle that they are using,” said Sweis.
This project is different from other documentaries about rare diseases because, at its core, it aims to connect to larger, universal themes such as family, overcoming unexpected obstacles, and the power of a community – creating an intimate and compelling story for the masses.
This film is dedicated to all the families in the world experiencing life through the lens of a rare disease, providing a platform, message, and an opportunity to help raise awareness to a larger audience.