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

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) 376-3204Email – [email protected] – matt.might.netLinkedIn –   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.netOrder your copy of the new 21CD book: Dads Raising Chidlren With Special Needs & Disabilities: A Guide For 21st Century Dads on Amazon: https://amzn.to/4tdvjcvJoin 21CD on the SFN U.S. Tour, a 30 day, 50 state, 60+ stop tour taking place from May 21 to June 21, 2026: to strengthen and grow the Special Fathers Network as well as give away copies of our new book.  Special Fathers Network –SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: “I wish there was something like this when we first received our child’s diagnosis. I felt so isolated.  There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through.”SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.Join the SFN U.S. Tour in one of 60+ locations all across the U.S. from May 21st to June 21st.  Go to www.21stCenturyDads.org for additional informaiton. Please conisder hosting, co-hosting or simoly joining the tour near your home.  Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videosPlease support the SFN. Click here to donate: https://21stcenturydads.org/donate/Special Fathers Network: https://21stcenturydads.org/