ONCE UPON A GENE - BONUS EPISODE - Rare Together Watch Together - Film Selections from The Disorder Channel in Partnership with Global Genes
Dan DeFabio and Bo Bigelow founded The Rare Disease Film Festival and have just created The Disorder Channel, accessible through Amazon Fire and Roku. Their work is connecting patients and families, raising awareness and inspiring a lot of conversations.
Global Genes is having a virtual 10 day summit, September 15th - 25th, 2020. On September 16th, 17th and 18th, they're holding a watch party with Dan and Bo. This event is free for patients and advocates, so check it out!
EPISODE HIGHLIGHTS
Dan, how long did you think about creating The Rare Disease Film Festival and why did you want Bo to be a part of it?
I previously ran a general interest short film festival. Partly because of the demands of raising Lucas, I stepped away from that and missed it. Talking to Bo about where to show rare disease films, there weren't a lot of options and we brainstormed what would make a better option. It wasn't out there and we created it. I met Bo in 2015 at Global Genes and was impressed with how proactive he was, even so early in Tess' diagnosis.
Bo, what did you think you could add to The Rare Disease Film Festival?
I knew I wanted to make a film about Tess and Dan talked me into it. In general, I'm a person who takes action and when I say I'm going to do something, I figure out how it needs to get done, what I need to know and then I do it. As an attorney, I felt like I could be helpful with contracts, agreements and making sure we did everything right.
Tell me about the first festival you had.
The first one was in Boston in 2017. We choose cities based on whether they're research hubs, if they have a lot of hospitals, have pharma companies and whether we can curate the audience. In addition to patient families, we want clinicians and people from the industry to attend so that they connect, lend support and share ideas. We sold out in Boston and we were surprised how much need there was and how well-received it was.
Bo, how did you feel after the first festival weekend concluded?
I was wiped out. It was an emotional thing, meeting all of the people, seeing people tell their story in film and then meeting them in person. It blew me away. In every advocate's life, there’s a sharing process and I'm still going through that process of learning how to tell my story. I was also energized and couldn't wait to keep going.
Due to the most recent event in New York City being cancelled, where did the idea to pivot into a tv channel come from?
We had been talking about a channel option prior, but when we couldn't do a face-to-face festival, we didn't want to move forward with a virtual event. When we looked at the option of moving into a channel format, we quickly realized the positive aspects such as having more films and longer films. We're getting great feedback and people are excited about the variety of things they can find on the channel.
How does someone create a film?
There's a blog post on The Rare Disease Film Festival website about it. It's the basic beginner's guide to creating your own film and it's a good starting point. One of the shows on the channel, called Splice Site, is interviews with people who have made the films on the channel. They share tips and pitfalls that makes it less intimidating.
Tell us about the event with Global Genes that's coming up in a few weeks.
We have picked films based on themes that will resonate with people, like the sibling experience, new diagnosis and happy ending stories of cures. Our event will be at 8:30pm ET on September 16th, 17th and 18th.
LINKS AND RESOURCES MENTIONED
The Rare Disease Film Festival
A RARE Patient Advocacy (un)Summit
ONCE UPON A GENE - EPISODE 015 - Films and Fatherhood
How To Make Your Own Rare Disease Film
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS