Jazz to Recognize Children from Rare and Undiagnosed Network at March 2 Game

Youth to Stand with Jazz, Bucks During National Anthem

SALT LAKE CITY (February 28, 2019) – Thirty-two children with rare and undiagnosed diseases and their siblings will stand with members of the Utah Jazz and Milwaukee Bucks during the National Anthem prior to the Saturday, March 2 game at Vivint Smart Home Arena.

The participating youth are living with a chronic and debilitating undiagnosed or rare disease, or a surviving sibling, who will hold a portrait in memory of a loved one. This season marks the fifth year that the group will be recognized at a Jazz game. 

The group’s attendance at Saturday’s game is supported by tickets provided through the Jazz player ticket donation program.

The grassroots organization Rare and Undiagnosed Network (RUN) raises awareness for the one in 10 Utahns who suffers from a rare disease, making up more than 30 million patients living in the world of the unknown. On March 1, RUN will launch the #UndiagnosedDay campaign on social media to shine a light on the cause, and the organization is spearheading National Undiagnosed Rare Disease Day on April 29. The campaigns target the public and seek to raise awareness among policymakers, public authorities, industry representatives and health professionals.

Jazz assistant general manager Justin Zanik, his wife, Gina, and their three undiagnosed children organized RUN to raise awareness for families with children afflicted with undiagnosed or rare conditions. The group works to provide genomic information and build community for families by bringing together researchers, insurance providers and industry stakeholders.

“These children persevere just like the players on the court, though their court is the four walls of a hospital room, emergency room, school, work or home,” said Gina Szajnuk, founder of RUN. “This moment at Saturday’s game will call public attention to the challenges faced by children fighting rare and undiagnosed genetic conditions, but it will also show them that they are not alone. We will stand together in hopes of better lives for all of them.”

For more information, visit rareundiagnosed.org.

Media Contacts: Frank Zang, (801) 325-2570, frank.zang@lhm.com or Matt de Nesnera, (703) 554-5499, matt.denesnera@utahjazz.com; Gina Szajnuk, Rare and Undiagnosed Network (RUN), (310) 883-4353, ginaszajnuk@gmail.com

—@JazzDoingGood or utahjazz.com—

About the Utah Jazz

Founded as the 18th member of the National Basketball Association (NBA) in 1974, and located in Salt Lake City since 1979, the Utah Jazz are committed to excellence as a team and in the community. On the court, the Jazz are the second-winningest team in the NBA over the last 30 years, having won nine division titles and two Western Conference championships along with 15 seasons of 50-plus wins, and are supported by one of the most passionate fan bases in all of sports. The Jazz are part of Larry H. Miller Sports & Entertainment that includes Megaplex Theatres, Vivint Smart Home Arena, The Zone Sports Network, NBA 2K Jazz Gaming, NBA G League Salt Lake City Stars, Tour of Utah professional cycling stage race and Triple-A Salt Lake Bees baseball.

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2019 RUN’s NBA Initiative #RUNNBA

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ABOUT RUN

RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.

Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk

To Read: The Szajnuk Journey

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