![\"Matt](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2017\/07\/Matt-Might.jpg\")
<\/a><\/p>\nMatthew Might, Ph.D.<\/strong><\/p>\n Ten years ago, Dr. Matthew Might was working in computer science and knew very little about the world of rare diseases. Today, he runs his own rare disease research institute at the University of Alabama, serves as a White House strategist for the Precision Medicine Initiative, and is an active advisor to the Undiagnosed Diseases Network coordinating center at Harvard University. \u00a0<\/span><\/p>\n \u201cI want to do as much as I possibly can for anyone with a rare disease and for a parent with a child with a rare disease,\u201d he says.<\/span><\/p>\n How did this journey begin? \u00a0At four years old, after years of testing, Matt\u2019s son Bertrand was diagnosed with N-glycanase deficiency, or NGLY1 deficiency. Bertrand was the first known case of NGLY1. \u00a0To be sure of its cause and understand how it might be treated, the family set out to find other cases. <\/span><\/p>\n Matt\u2019s previous successes as a computer scientist sparked an idea: write an online article about Bertrand\u2019s condition to help find others like him. \u00a0He published the piece, \u201cHunting Down My Son\u2019s Killer,\u201d on his personal website. Matt\u2019s goal to create a \u201cGoogle dragnet\u201d was indeed successful. Within 24 hours, the blog post had gone viral, quickly picking up traffic on search engines and forming a successful online presence for NGLY1.<\/span><\/p>\n One after another, the post turned up new cases of NGLY1. In just 13 months after Bertrand\u2019s diagnosis, Matt\u2019s blog had helped to uncover nine more cases. As the families connected, the fight against NGLY1 grew stronger. Soon the families were meeting one another to share stories and fund research. They became a community with one goal in mind: eliminate the challenges of NGLY1 deficiency through research, awareness and support. <\/span><\/p>\n Using his knowledge of data modeling, Matt identified two FDA-approved compounds that seemed like they could help Bertrand. \u00a0After three days on one particular compound, his son started crying tears for the first time, making him the first child with this disease to ever cry. Dr. Might has since co-founded a company that conducts personalized drug screens for genetic epilepsy.<\/span><\/p>\n \u201cIt\u2019s an understatement to say that Bertrand has changed our lives,\u201d Matt says. <\/span><\/p>\n As research unfolds for NGLY1, he knows that there are others in the world who may be the first with their condition. “There is a commonness to every rare journey,\u201d he adds. \u201cIf there is anything I can do to help them, I feel an obligation to do it.\u201d<\/span><\/p>\n In his lab, Dr. Might\u2019s interests focus on the intersection of computation and medicine to advance precision medicine through personalized therapeutics, which in his words means \u201cdata-driven, genome-driven medicine, all about delivering the right medicine to the right patient at the right time.\u201d<\/span><\/p>\n NORD is honored to present Dr. Matthew Might with a 2017 Rare Impact Award.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":" 2017 Honoree Rare Impact Awards Matthew Might, Ph.D. Ten years ago, Dr. Matthew Might was working in computer science and knew very little about the world of rare diseases. Today, … <\/p>\n