Special Fathers' Network Podcast

SFN Dad To Dad 423 - Matt Might of Birmingham, AL Director Of Precision Medicine at UAB, Author, Father of Three, One With NGLY1 Deficiency

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Sinopse

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 ga