Kickstarter

At age three I was diagnosed with Marfan syndrome, a potentially fatal genetic health condition passed on to my brother and me from our father. Growing up in Vermont there wasn’t much for kids to do besides play sports. But very early on my doctors warned my family of the Marfan-related risks of physical activity and my time on the field was cut short. In making the transition onto the sidelines I picked up a video camera and I’ve had one in my hands ever since. Losing the ability to play competitive sports hurt, but in its place I found my life’s work as a filmmaker.

Now, eight years after I acquired my first video camera, I want to use film to explore my birth, initial diagnosis, and personal experiences with Marfan syndrome, as well as those of my father and brother. I recently learned that my aorta is growing, one of the most dangerous aspects of Marfan syndrome. I could require open heart surgery in the coming years, just as my father did at forty and my brother did at eighteen. In the lead-up to surgery my brother’s medical decisions were shaped by my father’s own triumphs and setbacks. So too will mine. This film will delve into the way that Marfan Syndrome has shaped our family’s story, framed in the broader context of the healthcare in America.

When it came time for my brother to have heart surgery, our health insurance allowed us to go out of network so that he could receive cutting-edge care. Many are not nearly as lucky. As Washington fights over the direction of health insurance in America, I see our elected politicians getting caught up in party rhetoric and forgetting that their decisions actually affect the lives of every single American. Through interviews with the Vermont delegation to Congress, as well as other Washington insiders, I hope to learn more about what the new health insurance bill means for our country. Through the process I also want to show them what this debate truly means to individuals affected by their political decisions.

I will make a feature length documentary (60-90 minutes) for submission to festivals worldwide. Furthermore, I will expand the project further by working to implement it as a learning tool in schools and other institutions, hopefully spawning questions both about genetic health conditions and their treatment, as well as the nature of the healthcare debate in America. The short film I made at Columbia is already being used in an online learning portal for high school students as part of an initiative spearheaded by the National Institutes of Health. The film, and my story, were also discussed in front of a congressional sub-committee by my former doctor and the attending pediatrician at my birth, Alan Guttmacher, who is now the director of the Eunice Kennedy Shriver Institute of Child Health and Human Development at the NIH.

I am turning to you for the financial support to make my film a reality. As one of many tokens of my appreciation I will provide you a window into many aspects of the filmmaking process. Your donations will be added to the production fund to help with equipment and travel as the project is being filmed.