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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.

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BO BIGELOW

Bo made national news when he used Reddit and social media to find a diagnosis for the genetic disorder his daughter faces. Those same efforts led him to a researcher who is now investigating the disorder. Bo hosts the podcast “Stronger Every Day” and has written a book of the same name, as well as several novels. He co-founded Maine Rare. He was the State Leader for Rare Disease Day in Maine for NORD (the National Organization for Rare Disorders). He's also a lawyer.

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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.

Meet the rest of our team and our board of advisors here.