The NGLY1 Foundation (NGLY1.org) is pleased to announce the appointment of Carrie Ostrea as Executive Director as of July 1, 2017.

“Bringing Carrie in to lead the team represents a major step forward for our organization and our community,” said Matt Might, PhD, current President of NGLY1.org. “Having a dedicated professional with the personal passion of a rare disease parent will allow us to more aggressively pursue understanding, treatments and cure of this disease — as well as provide better support for patient community.  Carrie’s experience and recognized leadership within the rare disease community makes her an outstanding director for the organization, and we are thrilled to bring her talents to the community.”

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.  During her five years at Global Genes, she worked with over 300 rare disease organizations to provide support, education, and mentoring to help their organizations grow. 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.

Matt Might, PhD, current President of NGLY1.org will transition into the role of Chief Scientific Officer, spearheading innovative and exciting research towards a treatment for NGLY1 Deficiency.   Cristina Might will remain actively involved in NGLY1.org as President of the organization with a focus on strategic partnerships, advocacy, and development.  

Carrie will be responsible for the day-to-day management of the organization, creation of patient-centered education and support programs, as well as programming to improve the lives of patients through education, empowerment, advocacy and research.  She can be reached at carrie@ngly1.org.

About the NGLY1 Foundation:  The mission of the NGLY1 Foundation is to eliminate the challenges of N-glycanase Deficiency through research, awareness and support including 1] conducting and promoting science that may lead to understanding, treatments and cures for N-Glycanase Deficiency, 2] educating the scientific, medical, and general populations to improve diagnosis, understanding, and treatment of N-Glycanase Deficiency, and 3] providing guidance and community support for families of individuals (mostly children) affected by NGLY1 Deficiency.

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  • Kimberly Palma-Ortega says:

    Congratulations Carrie… This will be another avenue that will show your Passion for Change and your unwillingness to let things fall to the waste side. You will bring the SunShine to so many more Families and give hope to those parents in fighting for more. I love being a Rare Mom alongside you 💓