Why You Should Attend Our Rare Disease Film Festival

A couple years ago I made a documentary to bring awareness to my son’s rare disorder Menkes disease. That short film enjoyed some successes: Oscar-nominated actress Mary McDonnell agreed to replace my voice as the narrator, the film won best documentary at a festival, it got thousands of views online, and it screened to audiences of 500 orphan-drug professionals at a conference and got standing ovations. 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.

At a Global Genes rare disease conference I met Bo Bigelow, whose advocacy for his daughter’s condition impressed me. Her disorder related to the USP7 gene was so rare it didn’t have a name yet. It was only through Bo’s efforts that the few USP7 families in the world found each other and a researcher looking into the mutation. Bo had also made films. We got to talking. Months later he joined me at a film festival for a screening of my documentary. While it was a very nice event, the crowd was small and more interested in the films with a local connection than a disease they’d never heard of.

My experience submitting to various film festivals made me realize that while a few festivals might have a focus on science or medicine, there weren’t any festivals dedicated to rare disease. And while medical conferences were in some ways the ideal place to screen a rare disease film, film screenings tend to be an exception there, a rarity.

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?

I had experience running a general interest film festival, the Ballston Spa Film Festival. I had created the event and run it for four years. It is now in its 10th year. So creating a rare disease film festival seemed feasible. Bo liked the idea and agreed to co-direct the event, in part because any rare disease advocacy film, including mine or his, can struggle to reach audience beyond the core group already concerned. Gathering multiple films on multiple disorders seemed a logical extension of the advocacy slogan, “Alone we are rare, together we are powerful.”

Disorder: The Rare Disease Film Festival 2017 teaser trailer from Daniel DeFabio on Vimeo.

We decided to host the event in a city where neither of us lived but each had to travel to for advanced care for our children: Boston. The concentration of medical research, bio-tech and genetic professionals in that city meant we’d be going where our best audience already was.

The response to our idea has been overwhelmingly enthusiastic. Early on advocacy groups like NORD, The Mighty, RDUF, MassBio, and Global Genes agreed to become our promotional partners. And soon great sponsors came on board like Premeir Research, The Menkes Foundation, The Patient Experience Project, Horizon Pharma, Sanofi-Genzyme, Shire, Alnylam, Cambridge BioMarketing, 32 Mile Media and FDNA.

“Disorder: The Rare Disease Film Festival” will be held October 2 and 3, 2017 in Boston.

We will be showcasing films from around the world that address the challenges of life with a rare disease. Most (but not all) of our films are documentaries.

Between our slates of films, rare disease researchers and patient advocates will also share stories from their experiences. These discussions have been shown to spark new thinking towards translation applications of current treatments and inspire avenues for new research. Also each filmmaker attending will have an opportunity for questions and answers with our audience following the presentation of their film.

In addition to more than 30 films across two days of screenings, we will have a few “press worthy” moments such as the surprise presentation of a wheelchair Halloween costume by MagicWheelchair.com to a child with a rare disease in our audience.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Menkes Disease

Daniel DeFabio - Rare Disease Parent

To Parents Who Feel Overwhelmed by the Care for Their Newly Diagnosed Child

After the shock doesn’t wear off but lowers to a duller throb. After the tears slow a bit. After a nurse tries to educate you on medical techniques you feel in no way qualified to perform. After you’re alone with your child again. Around that time, you’ll begin to think there’s no way you can [...]
young boy smiling

When the Last Best Hope in Your Rare Disease Journey Lets You Down

Last week I was at the Global Genes conference for advocates of rare diseases. Hope was not only a theme or a tagline there, it percolated through even the most dire discussions of the roads ahead. For many facing a rare diagnosis, the road to hope (of treatment or a cure) goes a bit like [...]

The Film I Almost Couldn’t Make About My Son’s Disease

My son, Lucas, has Menkes disease. Never heard of it? Not many have. We didn’t until his diagnosis came. Lucas’ diagnosis came too late. If Menkes is detected in the first 10 days of life and treated, you can live a pretty normal, long life. If not, you get a much shorter life that’s far from [...]