Set to take place in Boston on October 3, 2017, the festival
encourages filmmakers whose work addresses issues of
concern to rare disease patients to submit their work
Disorder: The Rare Disease Film Festival (Disorder: RDFF) is a first of its kind event showcasing a myriad of films from around the world that address the challenges of life with a rare disease. Disorder: RDFF aims to increase awareness of these diseases among not only the general public but medical researchers as well. The event was created when two fathers of children with rare diseases – Daniel DeFabio and Bo Bigelow — met at an advocacy conference and realized they had both made films about their personal experiences. They were disappointed to find there were no film festivals in the United States dedicated to rare disease.
Bo Bigelow made national news when he used Reddit and social media to find a diagnosis for the genetic disorder his daughter Tess faces. Those same efforts led him to a researcher who is now investigating the disorder. Those events will be the basis for his upcoming short film on the USP7 genetic disorder, which will screen at the festival.
“As a parent of a child with a rare disease, I’ve realized that it’s the connections with other advocates that make all the difference. Whether it’s another family who knows what you’re going through, a filmmaker whose vision perfectly captures your struggle, or a scientist whose cutting-edge research is precisely what you need, these connections spread hope, enthusiasm, and crucial information. That’s why we’re doing this festival,” explains Bigelow.
Daniel DeFabio’s award-winning documentary short film, Menkes Disease: Finding Help & Hope, about the disease affecting his son Lucas, has screened at numerous festivals and medical conferences. The film is narrated by the Oscar®-nominated actress Mary McDonnell. “As my documentary toured the festival circuit, I realized in some ways the more ideal audiences were at medical conferences,” said DeFabio, “So I began thinking how we could craft a new festival with that more targeted audience.”
DeFabio and Bigelow are not new to running film festivals and advocacy organizations. DeFabio worked for over 20 years in the entertainment industry and founded The Ballston Spa Film Festival, which takes place in Ballston Spa, NY and is now in its tenth year. Bigelow co-founded Maine Rare and is the NORD (National Organization for Rare Disorders) Ambassador for the state of Maine.
As they launch this new endeavor, DeFabio and Bigelow are glad to have the support from some of the leading organizations in Rare advocacy — NORD, Global Genes, The Mighty and MassBio — to name a few.
“Events like the RDFF are so important to help raise awareness for the 1 in 10 Americans with rare diseases,” said Lisa Phelps, director of marketing and community relations at the National Organization for Rare Disorders (NORD). “It’s exciting to have the opportunity to work with Daniel and Bo to bring attention to these films and their subjects. By shining a light on the challenges that people with rare diseases and their loved ones face, we aim to inspire people to take positive actions to help others.”
“These films give patients and their loved ones a creative way to express their needs and concerns,” added Juliet Moritz, Executive Director, Strategic Development Department, Rare Diseases, at Premier Research, one of the festival’s sponsors, “And this festival will help build new connections in the rare disease community.”
Although film submissions have just begun, Disorder: RDFF is pleased to already have a few excellent films committed such as the Academy Award® nominated documentary short, “Our Curse,” directed by Tomasz Sliwinski which explores the disorder Ondine’s Curse (aka CCHS); “Imagine” made by a British teenager examining life with Niemann Pick Type C; and the award-winning animated short “Cuerdas” which shows how a young boy with a rare condition fits in at a new school.
Between the film screenings. rare disease researchers and patient advocates will also share stories from their experience. These discussions have been shown to spark new thinking towards translation applications of current treatments and inspire avenues for new research. Additionally, each filmmaker attending the festival will have an opportunity to participate in questions and answers with the audience following the presentation of their films.
More information on the festival, can be found here: www.rarediseasefilmfestival.com.