SALT LAKE CITY (February 23, 2015) – Thirty rare children will be on the court tonight at EnergySolutions Arena prior to the Utah Jazz game.
They are youth living with chronic and debilitating rare diseases or they are surviving siblings, who will carry a portrait in memory of a loved one, when they stand with members of the Utah Jazz and the San Antonio Spurs during the National Anthem prior to the game. They will be wearing lapel pins and wristbands from the National Organization for Rare Disorders.
One in 10 Utahns suffers from a rare disease, and the organization Utah Rare is marking Rare Disease Day with a series of events on Feb. 27-28. The group’s attendance at a 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.
Justin Zanik, Jazz assistant general manager, and his wife, Gina, 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.
“The opportunity to be on the court with NBA players will be a special and memorable experience for these children,” said Gina Szjanuk, founder of RUN. “Too often, their lives are caught up in a medical odyssey of fighting rare and undiagnosed genetic conditions. 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.”
Rare Disease Day takes place on the last day of February each year. Utah Rare is holding an advocacy event at 3 p.m. in the Utah State Capitol Rotunda on Feb. 27 and a symposium at noon in the University of Utah Health Sciences Education Building on Feb. 28. These events are free and open to the public with more information at www.utahrare.org. Another group of 60 Utah Rare patients and families will attend the Jazz game vs. Milwaukee on Feb. 28.