Cristina Casanova Might, MBA

Cristina Casanova Might’s oldest son, Bertrand, was the first patient diagnosed with NGLY1 Deficiency.  In September 2012, shortly after the discovery of the 2nd and 3rd patients with N-glycanase deficiency, she started NGLY1.org as a means of building the nascent NGLY1 community. Cristina is passionate about bringing technology and community together. She believes that partnership between patients, families, researchers and clinicians is essential to accelerate science—understanding, treatments and cures. She brings her background as a former tech CEO to run the day-to-day operations of NGLY1.org. Cristina holds a BS in Industrial Design and an MBA in Finance and Accounting from Georgia Tech. She blogs at overcomingmovementdisorder.com and tweets from @bertrandmight.

Matt Might, PhD

Matt Might is the father of the first N-Glycanase (NGLY1) deficient patient ever discovered. Dr. Might is an advisor to the NIH-sponsored Undiagnosed Disease Network with an emphasis on patient engagement and Internet-driven case-finding. Dr. Might is also a professor in computer science at the University of Utah, where he leads the U Combinator software systems research lab and receives funding from the Department of Defense, the National Science Foundation and the National Nuclear Security Administration. He was recognized with a CAREER award from the National Science Foundation and made a Presidential Scholar at the University of Utah in 2014. He received his Ph.D. in Computer Science from Georgia Tech in 2007. He regularly blogs at blog.might.net and tweets from @mattmight.

Diane Might

Diane Might is a 12-year member of Achievement Rewards for College Scientists (ARCS Foundation, Inc.) Phoenix. Diane serves on the Women’s Board of the Barrow Neurological Foundation and is past President of the Trends Charitable Fund Board. She is the recipient of the Phoenix Symphony Maestro Award, ARCS Light Award, and the Trendsetter Service.receives funding from the Department of Defense, the National Science Foundation and the National Nuclear Security Administration. He was recognized with a CAREER award from the National Science Foundation and made a Presidential Scholar at the University of Utah in 2014. He received his Ph.D. in Computer Science from Georgia Tech in 2007. He regularly blogs at blog.might.net and tweets from @mattmight.

Christina Rentzmann

Christina Rentzmann is a German international development professional with a Master’s degree in Business Administration. She delivered her first child in New Delhi, India, in 2011, where she was posted at the time. Her and her husband’s love for travelling the world was soon put to a test as they frequented hospitals on three continents to find out what was going on with their son. Christina strongly believes that every family deserves a diagnosis. She became a social media convert after she diagnosed her son with NGLY1 deficiency based on Cristina Might’s blog. Christina has a passion for connecting with other special needs families and sharing best practices and is forever grateful to her son for having found them this amazing community.

Matthew Fox

Matthew is the Chief Executive Officer for Pairnomix, a genetic research company focused on rare neurological disease. Prior to joining Pairnomix, Matthew led corporate strategy on the executive team at Upsher-Smith Laboratories, a branded and generic pharmaceutical company. Before joining Upsher-Smith, Matthew spent a decade as a professional healthcare investor, last working as a Portfolio Manager at Bank am Bellevue in Zurich, Switzerland. Additionally, Matthew is a Board Member for Proximagen, a clinical stage biotech company, and Treasurer of the Edina School Board in his home town in Minnesota. He holds a B.A. in Neuroscience and Behavior from Wesleyan University (CT).