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SALT LAKE CITY (February 25, 2016) – The Utah Jazz will host 30 rare children during the Jazz-Brooklyn Nets game on Feb. 27 at Vivint Smart Home Arena. The youth, living with chronic and debilitating rare diseases, will stand with members of the Jazz and Nets during the National Anthem.

One in 10 Utahns suffers from a rare disease, and the organization Utah Rare is marking Rare Disease Day with a series of events Feb. 27-29. The group’s attendance at the Jazz game is supported by tickets through the Jazz player donation program and sponsored by a grassroots organization, known as RUN for Rare and Undiagnosed Network. The children will also be wearing lapel pins and wristbands from the National Organization for Rare Disorders (NORD).

Jazz assistant general manager Justin Zanik, his wife Gina Szajnuk, and their three rare children, have organized RUN to raise awareness for families with children afflicted with undiagnosed or rare conditions and to bring together researchers, insurance providers and industry stakeholders to meet these families’ needs. Szajnuk is this year’s Utah Rare Chair, the Utah State Ambassador for NORD and the founder of RUN.

“The opportunity for these children to stand on the court for the National Anthem with NBA players is a moment in time these children will never forget. It is an honor and a very special experience for each and every single one of them,” said Szajnuk, founder of RUN. “Too often, their lives are caught up in a medical odyssey of fighting rare and undiagnosed genetic conditions. Many of these children suffer in pain every single day of their lives. This moment will call public attention to their challenges, but also show that they are not alone. We are standing together in hopes of better lives for all of them.”

Utah Rare is holding a symposium, supported by the Miller Family Foundation, Utah Jazz and University of Utah Health Care, beginning at noon at the Salt Lake City Marriott University Park on Feb. 27 and an advocacy event at 3 p.m. in the Utah State Capitol Rotunda on Feb. 29. These events are free and open to the public with more information at www.utahrare.org. Rare Disease Day takes place on the last day of February each year. 

Three other NBA teams – Boston Celtics, Milwaukee Bucks and Washington Wizards – are also supporting Rare Disease Day by hosting rare children at their games.