Carrie Ostrea

As a vital member of the rare disease community as an advocate, rare mom and nonprofit leader, Carrie brings to NGLY1.org many years of nonprofit experience in the rare disease space. She has been actively supporting the the NGLY1 community since the disorder was discovered in 2012.  Most recently, Carrie was the Senior Patient Engagement manager for Global Genes, a nationally recognized leader in the rare disease space.  She is also the co-founder and executive director of the Little Miss Hannah Foundation, a nonprofit organization based out of Las Vegas Nevada, that works to enhance the quality of life for children diagnosed with rare and medically complex in Southern Nevada.
Email:  Carrie@NGLY1.org

Cristina Casanova Might, MBA

Cristina Casanova Might is the Founder and President of the NGLY1 Foundation (NGLY1.org). Her oldest son, Bertrand was the first NGLY1 patient. 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 tweets from @bertrandmight and can be reached at cristina@ngly1.org.

Matt Might, PhD

Dr. Might is the Inaugural Director of the Hugh Kaul Precision Medicine Institute, the Hugh Kaul Endowed Chair of Personalized Medicine, and both a Professor of Medicine and Professor of Computer Science at the University of Alabama at Birmingham.  Dr. Might has served as a Strategist in the Executive Office of the President at the White House for both the prior and current administration. He is the Chief Science Officer of NGLY1.org and a Co-Founder and Scientific Advisor to Pairnomix, LLC. He was previously an Associate Professor of Computer Science and Adjunct Associate Professor of Pharmaceutical Chemistry at the University of Utah. He received his Ph.D. in Computer Science from Georgia Tech in 2007. He tweets from @mattmight and blogs at blog.might.net
Email:  Matt@NGLY1.org