A Day in the Life: Finding Help & Hope for Rare Diseases
Interested in how film making can work as rare disease advocacy? Come and meet Daniel DeFabio at the Festival of Genomics Boston on 3-4 October 2017.
Daniel DeFabio runs a visual marketing agency, DeFabio Design. He has created videos and motion graphics for American Cinematographer, PBS, biotechs, hospitals, TNT’s “The Closer” and HBO’s “Curb Your Enthusiasm”, as well as TV commercials for celebrities like Mel Brooks and John Cleese. In 2008 he founded the Ballston Spa Film Festival.
Daniel was inspired to work in genomics due to advocating for his son and Menkes Disease, and is the Co-founder of Disorder: The Rare Disease Film Festival. On day one of Festival of Genomics Boston, he will host the Rare Disease Film Festival, which will feature three inspiring short films: Imagine, Menkes Disease: Finding Help & Hope, and, Tess is not Alone. In addition to this, there will be a session talk on ‘How Living Rare Crates Citizen Scientists and Why Their Input is Invaluable to Stakeholders’, and a panel debate on Film making as Rare Disease Advocacy.
This is what a typical day looks like for him in his own words:
Most of my days are split among my running my business producing TV ads and marketing videos, organizing the rare disease film festival and the care of my eight-year-old son who has Menkes Disease.
Just got Lucas on the bus to his special-needs summer school program. My other son is off to day-camp. My work day can start.
I have four TV ads to make for John Cleese appearing live with “The Holy Grail”. Four new cities have been added to the tour and the standard TV ad I created last summer needs to be modified for each city.
My partner Bo has run into difficulties setting up the online ticket sales for our festival. I have no more luck than he does with the web interface. I prepare a new spreadsheet to help us track who will attend. I design a graphic for “Tickets on Sale now”, hoping now will be soon.
I’m downloading HD versions of some of our selected films for the festival. Often the versions we review to select films are not the highest possible quality but we would only need higher quality copies of those films that we select to screen. I email a few other filmmakers to get copies of theirs too and send them the official selection laurels to use online.
A phone call with CheckOrphan.com. They heard about our rare disease film festival and wanted to discuss promotional opportunities. Lots of good opportunities, including them shooting video interviews with some of our attendees at the event and then sharing those on their site.
A phone call with Fulcrum Therapeutics. They heard about our rare disease film festival and volunteered to help. Bo and I laid out three areas of need for the festival and they immediately and cheerfully said they could cover each one. They expect to send 10-20 people to volunteer. That’s a call that could not have gone better.
I check in with a client: a local car dealership. I produce their TV spots. They have only one ad remaining ‘in the can” that has yet to air. I showed them a couple ideas for new ones and we discuss when we might shoot more ads.
I re-edit my Menkes documentary. Another copper researcher has agreed to appear in the film and he updates some of the science since the 2015 version. His remarks suggest a need for a new motion graphic in the film to demonstrate intestinal copper absorption. I begin animating that sequence.
Solved the online ticketing!
Call to Brattle Theater to determine how many wheelchairs can fit in their theater.
Tonight is the first night of tenth annual The Ballston Spa Film Festival, a festival I founded but have not been actively running in recent years. I still serve as a judge and provide some marketing support. Judges are expected at 6:30 and we’ll be watching films until 11 pm. Half of those are screened outdoors under the star (unless it rains tonight).
Click here to register for the Festival of Genomics Boston 2017.