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Meet the Creators of Disorder: The Rare Disease Film Festival

SEPTEMBER 18, 2017
Daniel DeFabio and Bo Bigelow


In a few short weeks, Cambridge, Massachusetts will play host to Disorder: The Rare Disease Film Festival.

Thirty films, many of which are documentaries, will be shown between October 2nd and 3rd, and each will highlight a rare disease. The two men behind this campaign, Daniel DeFabio and Bo Bigelow, came to work on it as ways to raise awareness for their own children, each of whom lives with an uncommon condition.

Rare Disease Report sat down with the two innovators to discuss the inception and reception of this inaugural experience, as well as what the future holds for this niche event.

DeFabio: I had a documentary about my son’s disorder, Menke’s Disease, and as it played different film festivals and different medical conferences, each had some strength. The general film festival for general audiences is inexpensive and maybe, kind of, fun, but that audience don’t necessarily want to see a bunch of rare disease films. They’ll watch one or two because they’re a part of the lineup, but that’s not the focus. Whereas, at the medical conferences, that is a focused audience that does care about this particular rare population’s concerns. But medical conferences are expensive and not open to the general public as easily.

Bo Bigelow and I were looking at ‘Can we combine the best of both worlds?’ and ‘Why isn’t there a rare disease film festival?’ You’d think there would be one. Then, you start to think about ‘Yes, we’re rare. It’s 1 in 10 Americans.’ That’s not that rare – That’s 30 million people. At 30 million people, maybe there should be a film festival for that. So, it was really something where we were disappointed it didn’t exist, and then the lightbulb went off and we said ‘Maybe we should make sure it does exist.’

Bigelow: One of the goals of our foundation, aside from funding research is to find more patients. That’s something that the researchers at Baylor in Texas have told us they really don’t have time to do. They said ‘Hey, we’re the science guys. We’re going to be working in the lab, and we’re going to do that piece of it. You, Podcast Guy, you can find more people for us, so please do that.’ So, every time I had thought that maybe my podcast had run its course, or maybe my blog is done, no. I need to keep finding patients.

Daniel’s selling point (on joining him in starting the film festival) was ‘If you really want to find more patients, video is the way to go. If you make a film, and I’ll help you make it, this could really move things forward for you.’ That was important to think about, like, what’s the best way to reach a really large number of people really quickly, and video is it. It really makes a big, big difference. You can really find a lot of people.

As far as getting involved with the festival, I made a decision pretty early on that, rather than just making my film with Daniel and letting him do everything, I felt like it would just be more meaningful if I was able to see all of the films. He would gently nudge me and say ‘Hey, you should watch these films. It’s not going to just be me.” He’s right – the more you see the films, the more of the films you see, and the more you’re able to connect with them personally. You meet these families and you meet these filmmakers, and you just say ‘Wow. I understand, like… I know about Du15q. I know about Neimann Pick Type C. I understand where you’re coming from.’ Just being involved on a deeper level makes it a much richer experience.

DeFabio: I know about 100 people facing Menke’s Disease, and we’re all in a support group online. We’re in constant contact. If you do some other project, and if you’re at all a procrastinator, you think ‘Well, maybe someone else will get around to doing that.’ Any kind of noble cause-type of thing; maybe somebody else is going to solve hunger or cancer or whatever. But if you know 100 people, the pressure is a little bit more on you yourself. What am I going to do?

And then I thought ‘Within that 100 people, what are the odds that somebody else has some filmmaking skills and background in that area? I really kind of felt like, ‘This one’s on me.’ Maybe nobody else is going to want to or be able to step up on this one, so if anyone is going to make this film, maybe I should. We happened to be in the clinical trial at NIH (National Institute of Health), so we had access to the leading researcher on the disorder, and some of the other families that were facing it were willing to talk on camera. So, I knew I could do it, and if I could do it, I should do it.

Bigelow: I field all of the emails for Disorder, and if I could show you the last month of emails that I’ve gotten… I swear, every day, I get multiple emails that are ‘Hey, can we sponsor?’ or ‘Hey, I have a film.’ It’s heartbreaking, because you’ve got to tell them ‘I can’t take your thing at this point.’ We’re full with sponsors; we had to draw the line at some point, and we can’t take any more films. We had to close submissions, and have some finality there. We’re leaving out some great stuff. The fact that there’s that interest of people who didn’t make it into this round but really want to be a part of it, that tells us that we’re onto something and we need to do this again. It’s just a matter of when.

DeFabio: We definitely will do another. We already saw that there’s so much interest, and we’re confident that we can do a much bigger one the next time. Whether that means 3 days of screenings, or multiple screens at the same time, or maybe more speakers. We’re not quite sure quite what ‘bigger’ is going to mean, but we’re looking at what’s possible for the next step. It’s been very encouraging to know that more than what we’re doing now is definitely possible.

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Rare Disease Report is a proud media partner of Disorder: The Rare Disease Film Festival. For more information on the event, visit rarediseasefilmfestival.com. For updates from RDR, follow us on Facebook and Twitter.

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