Awareness Film Festival - Menkes Disease: Finding Help and Hope
Academy Award nominee Mary McDonnell narrates this look at a rare fatal genetic disorder called Menkes Disease. It prevents boys from metabolizing copper. Boys who get treatment in the first ten days of life can have long and relatively normally lives. If the disease is not detected and treated that early their lives are much shorter and far from normal. This short documentary aims to explain some of the basics of the disease and treatment but also provide context with examples from three families across the globe showing that there is life after this terrible diagnosis. And that life is more joyful and hopeful than you might expect.
Interview with Writer/Director/Producer Daniel DeFabio
Congratulations! Why did you make your film?
My son has the rare disorder Menkes Disease. When anyone first gets this diagnosis there's no good news to be found. This film doesn't change those facts but it does show them in the context of how families go on to enjoy life with their sons despite the prognosis.
Imagine I’m a member of the audience. Why should I watch this film?
Unless this disease has occurred in your family most people have no knowledge of it. And awareness can increase early detection. Early treatment can save lives.
How do personal and universal themes work in your film?
The personal is facing the specifics of a life-shortening disease in someone you love. But the universal shows how important hope is and how a happy, positive life can still be had when faced with dire medical conditions.
How have the script and film evolved over the course of their development and production?
This online article goes into some of my struggle to tell this story.
What type of feedback have you received so far?
A number of people have thanked me for making this so they don't feel so alone on their journey. Some people have learned about the treatment options for their child because of this film. It once played to a conference of 500 rare disease professionals and got a standing ovation.
Has the feedback surprised or challenged your point of view?
I think having told audiences through this film that our life is not as tragic as it might appear has helped remind me and convince me that it is indeed not as tragic as I might be tempted to believe.
What are you looking to achieve by having your film more visible on We Are Moving stories?
Our first duty is to those who get this same diagnosis. This film might provide them not only actionable steps toward treatment but hope from seeing how other families have managed.
Who do you need to come on board (producers, sales agents, buyers, distributors, film festival directors, journalists) to amplify this film’s message?
Anyone who can bring this message to more people is a welcome addition. But we specifically hope to reach NICU nurses, doctors, neurologists, geneticists and genetics counselors who might be in a position to recognize symptoms and diagnose in the first 10 days of life. Screenings at science, pharma, bio-tech and medical conferences are some of our best avenues. Journalists who reach those audiences are especially helpful.
What type of impact and/or reception would you like this film to have?
If this film increases awareness and leads to earlier treatment in even one case it will literally change and likely save a life.
What are the key creatives developing or working on now?
We may tackle one or two other rare diseases to bring similar awareness and hope to those conditions in future documentaries.
Interview: October 2016
_______________________________________________________________________________
We Are Moving Stories embraces new voices in drama, documentary, animation, TV, web series and music video. If you have just made a film - we'd love to hear from you. Or if you know a filmmaker - can you recommend us? More info: Carmela
_______________________________________________________________________________
Menkes Disease: Finding Help and Hope
Academy Award nominee Mary McDonnell narrates this look at a rare fatal genetic disorder called Menkes Disease. It prevents boys from metabolizing copper. Boys who get treatment in the first ten days of life can have long and relatively normally lives. If the disease is not detected and treated that early their lives are much shorter and far from normal. This short documentary aims to explain some of the basics of the disease and treatment but also provide context with examples from three families across the globe showing that there is life after this terrible diagnosis. And that life is more joyful and hopeful than you might expect.
Length: 12 min
Director: Daniel DeFabio
Producer: Daniel DeFabio
Writer: Daniel DeFabio
About the writer, director and producer:
DeFabio spends most of his work life making videos and TV commercials for American Cinematographer, PBS, TV personalities such as John Cleese, the Cake Boss, Theresa Caputo, and Dinosaur Train Live. His motion graphics work has been seen on TNT's The Closer and HBO's Curb Your Enthusiasm. He was the co-writer and co-producer of the first ever animated web series. In 2008 he founded the Ballston Spa Film Festival. He has written for Geek Magazine, Boing Boing, FanboyPlanet.com, The Mighty.com.
Key cast: Mary McDonnell
Looking for (producers, sales agents, buyers, distributors, film festival directors, journalists): All.
Release date: Feb. 2015