Disorder: The Rare Disease Film Festival will be held October 2 & 3, 2017 in Boston, MA.
This is a new event showcasing films from around the world that address the challenges of life with a rare disease. It will be held Oct. 2 & 3, 2017 in Boston, MA. Most, but not all, of the films are documentaries and many are less than 15 minutes. Filmmakers, researchers, and patient advocates will be present to answer questions and share stories.
The film festival was launched around the belief that increased awareness can connect patient families, inspire conversations about translation applications of current science, lead to new paths for research, and save lives. These films put the often abstract and dire clinical realities into the context of real people living their lives. Learn more at www.rarediseasefilmfestival.com/attend.
Some of the syndromes that will be featured during this film festival include: Prader-Willi Syndrome, Menkes syndrome, Nieman-Pick Disease Type C, Dup15q Syndrome, Chiari Malformation, Morquio A Syndrome (MPS IVA), Ehlers-Danlo syndrome (EDS), Congenital central hypoventilation syndrome (CCHS), Mutation of the NGLY1 Gene, Mitochondrial Disease, Severe Combined Immune Deficiency (SCID), Chronic Granulomatous Disease (CGD), Degos Disease, and Waldenstrom Macroglobulinemia.
Also Playing at the Festival of Genomics in Boston
Three of these inspiring short films will also be presented during a special session at the Festival of Genomics in Boston, MA on October 3. Imagine, Menkes Disease: Finding Help & Hope and Tess is not Alone have been selected for this program. The session will include a discussion about the value and impact of short films as rare disease advocacy. Session speakers include Bo Bigelow and Daniel DeFabio of Disorder, Carl Mason, producer of Imagine, and Patricia Weltin, CEO and Founder of the Rare Disease United Foundation. Learn more at www.festivalofgenomicsboston.com.
How “Two Rare Dads” Launched Disorder: The Rare Disease Film Festival
Daniel DeFabio is a filmmaker and father to a son diagnosed with Menkes Disease. After his son, Lucas, was born, he wanted to use his skills to help raise awareness for Menkes so he began interviewing other families, clinicians, and experts to make a film. With encouragement and support from the rare diseases community, the short film was produced with incredible success. It won best documentary at a festival, was viewed thousands of times online, and was screened to 500 orphan-drug professionals at a conference, with a standing ovation. It was even narrated by Oscar-nominated actress, Mary McDonnell, who agreed to replace Daniel’s voice as narrator.
“Each of those successes felt great, perhaps even like progress. But if your aim is advocacy, then your goal is to get better treatment or a cure. By that standard, the film fell short. I felt I needed to find more audiences for it,” Daniel said.
Menkes Disease is a rare genetic syndrome that leads to a copper deficiency. At a certain point, the damage of this copper deficiency is irreparable but if it is diagnosed within the first few days of birth, Menkes Disease can actually be treated, significantly improving and likely saving the lives of children with this syndrome. After the film, Daniel wanted to do more to accelerate advancements for patients with Menkes and other rare diseases.
While attending a Global Genes Conference, Daniel met Bo Bigelow, another filmmaker. Bo’s daughter had been diagnosed with a rare condition related to the USP7 gene that hadn’t even been named yet. Daniel was immediately impressed with how much awareness work (with tangible results) Bo had accomplished in the short time since learning he needed a diagnosis for his daughter, Tess. Bo had made national news when he used Reddit and social media to find a diagnosis for the genetic disorder his daughter faces. Those same efforts led him to a researcher investigating the disorder. With their shared background and mission, Bo and Daniel saw an opportunity to generate greater awareness around rare diseases through film but felt most film festivals would be the wrong audience.
“Bo and I began to think: What if there was a film festival that combined the general interest from the public of a typical festival with the more motivated specific interest from advocates, industry, and researchers found at a conference? Could we create that event?”
Together, they decided to begin organizing a film festival specific to rare diseases, uniting the entire community instead of focusing on specific syndromes. Rare Disease affects 1 in 10 people, making these syndromes not at all rare when you look at the issue collectively.
“Gathering multiple films on multiple disorders seemed a logical extension of the advocacy slogan ‘Alone we are rare, together we are powerful,’” Daniel said.
They began looking for a city to host the event and decided on Boston, not only because they had to travel to Boston frequently for their children’s medical care but because the area offered a unique concentration of medical, research, biotech and genetic professionals. Many of these groups offered to sponsor and promote the event, including FDNA.
“The response to our idea has been overwhelmingly enthusiastic,” Daniel said. “Early on, advocacy groups like NORD, The Mighty, RDUF, MassBio, and Global Genes agreed to become our promotional partners. Soon great sponsors came on board like Premier Research, The Menkes Foundation, The Patient Experience Project, Horizon Pharma, Alnylam, Vertex, Sanofi-Genzyme, Shire, Cambridge BioMarketing, 32 Mile Media, and FDNA.”
FDNA is proud to support this event as part of our ongoing mission to give hope to rare disease patients and their families. We are facing rare diseases head-on by providing genomic insights through artificial intelligence and putting innovative technology like Face2Gene in the hands of doctors worldwide. Learn more at FDNA.com.
About Daniel DeFabio
Daniel has written about Menkes Disease for The Mighty. One of these stories won the 2015 Rare Patient Story Award from Global Genes. He made a 12-minute documentary on Menkes Syndrome narrated by Oscar nominee Mary McDonnell. In 2008, he founded the Ballston Spa Film Festival. He was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet’s first animated series. He has created videos and motion graphics for American Cinematographer, PBS, bio-techs, hospitals, TNT’s “The Closer” and HBO’s “Curb Your Enthusiasm.” He is a graduate of Boston College.
About Bo Bigelow
Bo made national news when he used Reddit and social media to find a diagnosis for the genetic disorder his daughter faces. Those same efforts led him to a researcher who is now investigating the disorder. Bo hosts the podcast “Stronger Every Day” and has written a book of the same name, as well as several novels. He co-founded Maine Rare. He was the State Leader for Rare Disease Day in Maine for NORD (the National Organization for Rare Disorders). He’s also a lawyer.
