TWO RARE DADS

We are two fathers of children with rare diseases who met at an advocacy conference.  Daniel was immediately impressed with how much awareness work (with tangible results) Bo had accomplished in the short time since learning he needed a diagnosis for his daughter, Tess.

Bo liked the fact that Daniel had made a documentary about his son Lucas' disorder, since Bo had made some films himself.

BO BIGELOW

Bo Bigelow made national news when he used social media to find a diagnosis for USP7, the genetic disorder his daughter faces. Those same efforts led him to a researcher who is now investigating the disorder. He and his wife co-founded the Foundation for USP7 Related Diseases. Bo hosts "Stronger Every Day," a weekly podcast about Tess and issues about autism and other disabilities. He is also a disability rights attorney in Maine.

Daniel DEFABIO

Daniel has written about the rare disorder Menkes Disease for The Mighty. One of these stories won the 2015 Rare Patient Story Award from Global Genes. He made a 12 minute documentary on Menkes Syndrome narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival. He was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet's first animated series. He has created videos and motion graphics for American Cinematographer, PBS, bio-techs, hospitals, TNT's “The Closer” and HBO's “Curb Your Enthusiasm”. He is a graduate of Boston College.