The by-products of D:RDFF 2017: a SMA collaboration.

When Bo and I started this film festival, we asked ourselves why it was needed, and why it would be a better option than sharing rare films online or some other strategy. We agreed it would be not about just presenting the films to a larger audience but cultivating the best audience. We wanted to get the right people in the same room. We imagined this as mix of patient advocates, filmmakers, doctors and industry. We wanted the stories in the films to prompt conversations and collaborations among them. And it worked.

Among the films we screened on our first day was “Love and Atrophy” by Gareth Burghes, addressing Spinal Muscular Atrophy. Gareth did a brief Q&A after his film. In the audience were Artemis Joukowsky and Cray Novick. They are also filmmakers and currently at work on a feature length documentary on SMA and the recent treatment breakthrough. After the three met and talked at our festival, they have teamed up to combine their efforts and work together on the new film.

In the video below you'll see some of those moments from our festival. It is a fundraising video for the KickStarter campaign to help fund their film. They have one week left to raise the rest of their films budget. Like most KickStarter campaign there are rewards for donating at various levels. If you're facing SMA in your family, the $100 level might be of interest since the filmmakers will create a video telling your SMA story with you.

Video

Link to the their KickStarter

Note: funds raised here do not go to D:RDFF.

 

 

The hardest question of the festival.

After each slate of our films screened we had filmmakers do a brief Q&A with the audience. It was after our second slate of films when the four filmmakers on our stage got the toughest question of the whole festival. For the first question of that session a woman was in tears and asked “How do you do it? How can you handle all this? I'm overwhelmed just watching the films for an hour. Is there counseling or mental health help available to you?”

Before I get to how the question was answered let me describe part of what makes it so difficult to answer. At most film festivals filmmakers doing Q&A will get questions on the art and craft of telling stories on film. How and why they made the creative decisions they did. We knew that our festival set up a different dynamic. Our filmmakers were much more likely to get asked about the content of their films, the science or the medical issues. And in many cases they might not be the best equipped to answer those questions. Some of them are more the messenger than the expert. Even those who are rather expert, perhaps due to living the experience, are not likely to be the talk-like-a-geneticist level of expert.

We tried to anticipate this a bit by having not just a filmmaker speak but when possible a leader from the related advocacy group too. Even so that first question threw the panel. I was off to the side and could see each of them hesitate a bit. It was more than the standard “would you like to take that one or should I?” hesitation. It was clear to me no one was very comfortable speaking to this on behalf of rare caregivers especially to an audience filled with so many rare caregivers.

So I took the question myself. My answer wasn't as direct or as helpful as the asker might have liked. I said:

There are some programs to be of help to families and caregivers. Support groups and some counseling. It can vary by state. But I can tell you – and I think most people here would agree-- we can't find the time to take advantage of those services. We're tredding water most days. If I could have an hour of counseling, that would be a vacation. I remember one time when my son was younger I went to the dentist. He was literally drilling my teeth for an hour and it was the most peaceful and relaxed I had been in months.

Not the most helpful answer, but a true answer.

Maybe if any of you have a more direct answer that offers specific programs that could be of help you could mention them in the comments.

 

 

 

FAQs

 

Can I see the films online?

Some of them yes and we've linked to them here:
https://www.rarediseasefilmfestival.com/selection2017

But others are not publicly online and our rights to them are for festival screenings only so we can't post them. A couple of them are available to buy a streaming copy and we've including that link in a note after the film's name. In other cases we link to just the trailer for the film and note that.

Will you do this again next year?

No not in 2018 (we need some sleep), but yes in 2019. Exact city and date are TBD.

Why don't you charge more for tickets?

We aren't trying to make money with this festival or even to fund raise with it. If you can contribute we can name a few dozen rare disease foundations who'd like your money. We wanted to ensure our event was not a burden to rare patient families. But we discovered an unintended consequence: with a low ticket cost people are more likely to skip the event even though they bought tickets. We're looking are better solutions for our year 2 event. We'll likely have a lower ticket cost for rare families and a slightly higher one for all others.

Why were there empty seats, I heard it was sold out?

It was disappointing for us to see empty seats. We assume a few people decided they couldn't attend after buying their tickets. (see answer above).