Our guest this week is Matt Might of Birmingham, AL who is the director of the Hugh Kaul Precision Medicine Institute at the University of Alabama at Birmingham, a researcher, author, TEDx presenter and perhaps most importantly, father of three, including a son with NGLY1 Deficiency.

Matt and his x-wife, Cristina, are the proud parents of three children: Winston (10), Victoria (14) and Bertrand who was born in 2007 and very sadly passed away in in 2020 at age 12. Bertrand was born with an ultra-rare genetic disorder known as NGLY1 Deficiency, which prohibits the creation of the enzyme N-Glycanase 1. At the time of diagnosis, NGLY1 Deficiency was so rare, Bertrand was considered an N of 1, the only person known to have this particular condition.

Matt was a tenured computer science professor. Motivated to find a cure for his son he pivoted into the world of precision medicine. Through a brilliant blog post entitled: 'Hunting Down My Killer' they were able to find seven more children with NGLY1. Matt also gave a gave a highly informative and well delivered TEDx Talk.

We also learn about NORD (National Organization for Rare Disease), the Great Science Foundation and NCATS (National Center for Advancing Translational Sciences) within the National Health Institute.

All on this epsiode of the SFN Dad to Dad Podcast.

Show Notes -
Phone – (404) 376-3204
Email – matt@might.net
Website – matt.might.net
LinkedIn – https://www.linkedin.com/in/matthewmight/
TEDx Talk https://www.ted.com/talks/matt_might_being_an_accidental_pioneer_in_precision_medicine Blog – blog.might.net

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