Greetings! This project is ultimately a labor of love in honor of my little brother David. I first learned about the power of telling David’s story in 2003 while attending graduate school. Our first assignment was to “make an audience feel something." In response, I detailed the anguish of a seemingly simple trip to the grocery story with my new baby brother, and recalled how tough life was for him because of his rare genetic disease. I was shaking with fear as I revealed just a small part of the story of my brother's short life...
Above our heads, a woman reached for a package on a shelf, then froze. Revulsion and horror flashed across her face as she gazed down on my baby brother, whose head was wound with bandages under his knit cap. A twist of the genetic code had left his eyes unseeing, his mind destined to develop little past infancy, and his head -- which I loved as much as any would one's brother -- disproportionately large. Waves of rage and love filled my small body as I sidled between the woman and my brother, determined to protect him from the world's harsh gaze.When my eyes finally lifted from the page from which I was reading, they met nary a dry eye in the room. I was shocked to see so much empathy peering back at me from the eyes of my audience; my oldest best friend was even more shocked that I had spoken these words aloud at long last.
Since then, I have created nearly fifty short videos about various subjects, but David's story remains to be told. I can't keep silent about his story any longer. This decisiveness has grown only stronger because I've learned that there are 7,000 rare genetic diseases that affect 350 million people around the world. Like my family all those years ago, many people have mysteries hidden in their genetic code. Solid medical information is still hard to find, and, even with the best of care, families face profound struggles. I have already begun to interview professionals who know far more than I about genetics and bioethics. I have already begun to explore the social, political, and religious perspectives associated with this issue, and I wonder about the future.
Keep your eyes on this space during the course of this campaign, as I'll be sharing videos and snippets of interviews already conducted. Thank you to family friends like Freddy Shaw, Deanne Callegary, and Laura Werntz for sharing their recollections, and to Duke University's Nicholas Katsanis, Ph.D. & Director of The Center for Human Disease Modeling, & Professor of Cell Biology & Brumley Distinguished Professor of Pediatrics, and Nita A. Farahany, Professor of Law and Philosophy & Genome Sciences, as well as member of the Presidential Commission for the Study of Bioethical Issues for sharing their expertise.
After a year and a half of pouring all of my own resources into the project (I will continue to do so!), I now need your help.
What We Can Accomplish
With your help, and the success of this IndieGoGo campaign, I envision that together we can make this project possible.
I've already applied to more than 10 different grants, but I have yet to secure funding. Competition for these funds is fierce, the applicants numerous, and feedback isn't given. However, when I share David's story and my desire to make this film with individuals, you all connect with it immediately. Together, we can show these grantors that there is interest not just in David's story, but in genetics in general, and in rare genetic disease specifically. In sum, your support through this IndieGoGo campaign may help leverage the grant dollars I need to fully fund the project.
To quote from Kevin Spacey's recent viral rant, "the audience has spoken. They want stories." Please help me to tell this story!
By sharing your funds, I will be able to focus more of my time on this project, and you will help me to hire an animator specifically.
The Perks & Events
Stay tuned for more information about the campaign closing party!
I'm truly amazed by the generosity of the community that surrounds me and the support that has been shown for this project, specifically through the Sept. 21st kickoff event for this campaign. We have already surpassed the halfway point!
I'd like to thank:
My uncle Dan and aunt Jean Schuster, Bridget Parlato of Full Circuit Studio, my momma Kitty Brown and her kayaking friends, Frank Patinella and all the guys in Sac Au Lait, Cheryl Wade of Mill Valley General Store, Natalya Brusilovsky of Shorty's Tulip, Baltimore's best illustrator Justin Duvall, yogini Lorien Nemec Butler, Laura Cohen and the women of Lady Brew. And, of course my advisors: wonder woman Chrissy Washburn, award winning producer Jody Ericson Santos, my birthday twin and journalist Julie Scharper, and the once stranger on a train Adam Gronski of WETA.
Words can barely touch upon the gratitude I feel for all of you.
All of those who are willing and able to make a contribution will have their names in the credits. What's not to like about that?!
Impact Of Your Help
As I already alluded to, above and beyond this initial IndieGoGo campaign goal of $5,000, it is my hope to raise a total goal of $50,000 which can be achieved by securing a large grant, a couple of smaller family foundation style grants, contributions from several of you with the means, and a large base of support from as many people as possible.
Please help in any way you can, and at any level you are able! Please share the link to this campaign, and please share your ideas! I'm open to suggestions, introductions, and opportunities to make in-person pitches. Thank you!