Bio: Gina Szajnuk (Zanik)

January 17, 2016 4:02 pm Tags: , , No Comments 5

 


Gina Szajnuk (Zanik) was born and raised in Madison, Wisconsin. She serves as the Co-founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization. Her three children, each of whom live with an undiagnosed rare disease, continue to inspire and motivate her to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Gina is also living with an undiagnosed rare disease. In 2016, Gina was the Chair of Utah Rare and made Utah the #1 state for Rare Disease Day. She was on the Executive Committee for Utah Rare for four years. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. She is a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN). She is a member of the Undiagnosed Disease Network International (UDNI) as well as the Rare Disease Diagnosis Consortium. She has been asked to be a Rare Disease Advocacy Professional for The Rare Advocacy Movement (RAM). She served as the National Organization for Rare Disorders (NORD) as their Utah State Ambassador and then as their Undiagnosed Advocacy Ambassador for four years. She is currently working to launch, as the Co-founder, a new platform, RUNmyDNA.com. She is a public speaker as well as a contributor to The Mighty. She is married to Justin Zanik, the NBA Utah Jazz Assistant General Manager. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of rare and undiagnosed diseases through RUN’s NBA Initiative started in 2015. In 2016, Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as well as accepted the Rare Champion of Hope – Advocacy Award from Global Genes. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.