Gina Szajnuk: Co-Founder/ Executive Director

Gina Szajnuk: Co-Founder/ Executive Director

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 a rare and undiagnosed 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 undiagnosed and is now the Undiagnosed Advocacy Ambassador for the National Organization for Rare Disorders (NORD), previously she was their Utah State Ambassador. Gina continuously fights for the rare community with her role as Chair of Utah Rare and making Utah the #1 state for Rare Disease Day in 2016. She offered a free symposium through the University of Utah and organized the Utah Rare State House event. Gina works around the clock to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform.  She is currently launching as the Co-founder for both the Undiagnosed Alliance as well as a new platform, RUNmyDNA.com.  She is married to Justin Zanik, the NBA Milwaukee Bucks Assistant General Manager, previously with the NBA Utah Jazz. Through her husband’s position in the NBA, Gina has brought awareness to the NBA about the importance of Rare Disease Day. In 2016, seven NBA teams honored the rare community. Gina is the winner of the Rare Voice Award  from the EveryLife Foundation for Rare Diseases as their number one State Advocacy Ambassador, she also recently accepted the Rare Champion of Hope – Advocacy Award from Global Genes. She is a contributor to The Mighty and served on the Mountain States Genetics Regional Collaborative while living in Utah and she continues to serve on the Program Committee for the National Ability Center. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.

*Photograph by Season Atwater of Aware of Angels