DISORDER: The Rare Disease Film Festival and The DISORDER Channel were founded by two rare disease dads, Daniel DeFabio and Bo Bigelow. They discuss the power of art and visual representation as an effective medium for raising awareness of rare diseases

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

The DISORDER Channel is the only place on TV dedicated 100% to the stories of people facing rare diseases. We have short films and features, documentaries, narratives, and even some fantasy films and talk show episodes about rare. Some are animated, some have puppets. Many of the films were selected to screen at past editions of Disorder: The Rare Disease Film Festival, but others you will not have seen before. Founded by two rare disease dads to amplify the voices of those hoping to raise awareness of rare diseases, The DISORDER Channel is free to add to your Roku or FIreTV devices.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Mostly we were disappointed that something like this did not already exist. And then the coin dropped: “If it doesn’t exist, and we wish it did, probably some other people wish it did too, so we should create it!” The it in this case was a good showcase for rare disease stories told in film and video. We had made short films about our children with ultra-rare diseases (Bo’s daughter Tess with USP7 and Daniel’s son Lucas with Menkes Syndrome). We found some success showing these at film festivals and then at medical conferences.  But we found each was lacking. Film festivals had a lower cost, a wider appeal but not a motivated interest in medical stories. Medical conferences had the ideal audience but were often expensive to attend for rare disease families. The aha moment was thinking how we might combine the best of both and make the rare disease patient story the star of the show.

2.

How does your business benefit the rare disease community?

With our film festival we intended to curate not only the films screened but the audience who saw those films. We wanted not just the patients and advocates to be in the room but also clinicians who might need to make a rare disease diagnosis and people from industry who might be working on treatments. We knew the power of these stories as seen in the films was amplified when we gather together in the same room, undistracted for an hour, giving our undivided attention. And then those people exit the theatre armed with new information. We wanted to create the opportunity to meet the “right people” in the lobby to continue the conversation and compare notes and make new connections so that work being done in one disease area might benefit another.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

The first place Daniel turned for advice was Patty Weltin. She had also seen the value of art in putting a visual face to rare disease stories when she launched her programme Beyond the Diagnosis to showcase painted portraits of kids with rare diseases. Patti and Daniel instantly connected as rare disease parents and people with a shared mission. Patti was so welcoming and open with how she had launched her efforts; it gave Daniel more confidence that the film festival could be a success.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

It is hard. We very much relegate this to a part-time endeavour. We have so many conversations about great new additional projects we could take on and we consistently check in with each other about the bandwidth we have and how it balances against our paid jobs, caregiving to our rare children, parenting our children in “typical” health and even the other advocacy efforts we are a part of.

5.

What advice do you have for someone starting their own business?

Unless it’s something tried and true (like maybe a franchise opportunity), be sure it’s a true passion project. And in the rare disease space very little is tried and true. Are you willing to not make money at it? If you would do this work for free you’re starting from a good place.

6.

What are the most rewarding aspects of establishing and running your own business?

We pride ourselves on being nimble. If we’re passionate about something we can usually make it happen in relatively short order. It feels great to put something new out into the community which not so long ago hadn’t existed. But the most rewarding thing is feedback from a rare disease patient or caregiver who says “I needed to hear this today, it really helped me.” Often, we wonder how impactful some of what we do might be. It means everything to discover it made a difference for someone.

7.

What would you consider to be the greatest achievements of your business thus far?

Hearing from people who have been touched by the stories we share. Many in industry have stopped us to say the story they just watched reminded them of why they began in this career. Some go on to say their work has never brought them face to face with a patient of the disease they work on every day, but our film provided that connection for them.

8.

What advice would you give someone considering working in the rare disease space?

Join the online groups, go to the conferences, get to know the rare disease patients, caregivers and advocates. Have your ear (and heart) open to the needs of the community.

9.

What are your hopes for the future of your business?

DISORDER: The Rare Disease Film Festival has in turn spawned The DISORDER Channel. It is currently only available to those with a Roku or FireTV device.  We would love to develop apps to bring our channel to AppleTV, Android TV, iPhone and Android phones.

10.

If you hadn’t founded The DISORDER Channel, what was Plan B?  What did your 10-year-old selves want to be? 

We each still work a regular job, so in a sense The DISORDER Channel is the plan B. 

Bo is a lawyer focused on Individual Education Plans for kids with special needs. Daniel is the director of community engagement for Global Genes. 

At age 12 we both wanted to design video games. At age 16 we had downgraded our ambitions to wanting to be rock musicians!