Adapting Your Mindset In The Face Of Adversity with Daniel DeFabio

At the age of 12 months, Daniel DeFabio’s first child Lucas was diagnosed with a rare disease called Menkes Syndrome. After adjusting his expectations of what raising a child might look like Daniel began to tell Lucas’ story with a short documentary. That film led Daniel to co-found DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both which are dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases.

One of Daniel’s stories about Lucas won the 2015 Rare Patient Story Award from Global Genes. His award winning 12 minute documentary on Menkes Syndrome is narrated by Oscar nominee Mary McDonnell. In 2008 he founded that 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 marketing materials for American Cinematographer, PBS, RightRace, bio-techs. Hospitals, most major movie studios, TNT’s “The Closer” and HBOs “Curb Your Enthusiasm”, among others. Daniel currently works as Global Gene’s Director of Community Engagement. 

Daniel is here to today to share his powerful personal story.

The Disorder Channel
DISORDER: The Rare Disease Film Festival
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