Utah Jazz to Honor Rare Disease Day with Governor Cox and First Lady Cox
Pregame ceremony to recognize the Rare and Undiagnosed Network (RUN) and the Utah Rare Disease Advisory Council (RDAC)
** Media interested in interviews and access should contact Cassie Uncapher, 801-920-6246, cassie.uncapher@teamseg.com**
SALT LAKE CITY (February 28, 2026) – The Utah Jazz announced today plans to recognize Rare Disease Day during a special pregame ceremony on Saturday, Feb 28. The event will highlight the work of the Rare and Undiagnosed Network (RUN) – founded by Jazz General Manager Justin Zanik, his wife Gina, and their three undiagnosed children to raise awareness and empower rare and undiagnosed patients and their families – and the Utah Rare Disease Advisory Council (RDAC).
Utah Governor Spencer Cox and First Lady Abby Cox will join a group of rare and undiagnosed patients and advocates on the court for the commemoration. During the ceremony, Governor Cox will officially declare Feb. 28, 2026, as Rare Disease Day in Utah.
One in 10 – about 360,000 Utahns – suffer from a rare disease, and the grassroots organization Rare and Undiagnosed Network (RUN) is raising awareness for the more than 300 million patients living in the world with a rare or undiagnosed disease. The pregame ceremony participants are living with a chronic and debilitating undiagnosed or rare disease, or are surviving siblings who will hold a portrait in memory of a loved one when they stand on the court alongside the Governor and First Lady. The group’s attendance will be supported by tickets provided through the Community Ticket Program.
RUN works to provide genomic information and build community through advocacy, networking, and support. In 2015, RUN partnered with the Jazz to launch an NBA awareness initiative to educate the public, policymakers, researchers, healthcare professionals, and industry leaders about rare and undiagnosed diseases. Because about 80 percent of rare diseases have a genetic cause, RUN emphasizes the importance of genetic testing and research in helping patients find answers and receive appropriate care.
“It’s an honor to play in the NBA. Success at this level requires extraordinary dedication, perseverance and heart. In many ways, that same determination is reflected in children and families navigating rare and undiagnosed genetic conditions. While their journey looks very different from a basketball court, they show up every day with courage and resilience. For them, the ‘court’ may be the four walls of a hospital room, an emergency room, a classroom or their own home. Too often, their lives become a medical odyssey filled with uncertainty and challenges. This moment helps shine a light on their strength, raises awareness of their fight and reminds them that they are not alone. We stand together in hope of brighter, healthier futures for all of them,” said Gina Szjanuk (Zanik), founder of RUN.
About Rare and Undiagnosed Network (RUN)
RUN stands for Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, healthcare providers who share the same mission: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. Learn more about RUN’S NBA Initiative. For more information on RUN, visitwww.rareundiagnosed.org.
About Utah Rare Disease Advisory Council (RDAC)
The RDAC was formed under Utah Code Annotated Section 26-1-41, enacted during the 2020 legislative session of the Utah Legislature to advise the state legislature and state agencies on improving access to treatment and services provided to individuals with a rare disease; make recommendations to the legislature and state agencies on improving access to treatment and services provided to individuals with a rare disease; and identify best practices to improve the care and treatment of individuals in the state with a rare disease. https://utahrdac.org/
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 fifth-winningest team in the NBA over the last 30 years, having won nine division titles and two Western Conference championships along with 17 seasons of 50-plus wins, and are supported by one of the most passionate fan bases in all of sports. The Utah Jazz also operate the Junior Jazz program, the largest and longest-running youth basketball league in the NBA, featuring more than 70,000 players and an additional 13,000 volunteers who take part annually across six states. For more information on the Utah Jazz, an entity of Smith Entertainment Group, visit www.utahjazz.com.
Media Contact: Cassie Uncapher, SEG, 801-920-6246, cassie.uncapher@teamseg.com or Gina Szajnuk (Zanik), Rare and Undiagnosed Network (RUN) & Utah Rare Disease Advisory Council (RDAC), (310) 883-4353, ginaszajnuk@gmail.com
Contact information: Gina Zanik (Szajnuk)
Co-founder and Executive Director, Rare and Undiagnosed Network (RUN)
Chair, Utah Rare Disease Advisory Council (RDAC)
W www.rareundiagnosed.org
E ginaszajnuk@gmail.com P (310) 883-4353
Media:
To Read: RARE Revolution Magazine: Undiagnosed.
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson
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
To Read: “Push Through” by Ava Szajnuk
To Listen: RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”sease Advocate Discusses Life with an Undiagnosed Condition”
To Read: How Utah Jazz GM Justin Zanik found himself fighting for not just his team, but his life – ESPN
To Listen: ESPN Daily: How a Family’s Bond Saved the Jazz GM
To Watch: Fox 13 News “Undiagnosed”
To Watch: RUN’s Two Year Anniversary Video by Small Forces
To Watch: RUN’s One Year Anniversary Video
To Watch: #UndiagnosedDay RUN’s 2016 Video
About
Gina Zanik (Szajnuk) started her career in the entertainment industry. She worked in Hollywood for over ten years. She supported movie directors, producers, actors, literary agents and executives. She entered the world of the NBA and NFL and served as Director of Client Services and Executive Assistant to the CEO at Priority Sports & Entertainment in Chicago. She supported the President of Basketball Operations at U1st Sports, an NBA and European basketball agency. She worked in corporations supporting VP, President, and CEO level executives for five years in Los Angeles and Manhattan. She now serves as the Founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization in Salt Lake City formed in 2014. Her three children, each of whom live with a chronic, invisible, and undiagnosed rare disease, continue to inspire, and motivate her to empower patients and their families with genomic information and community through advocacy, networking, and support. Gina is also living with a chronic, invisible and undiagnosed rare disease. She serves as the Chair of the Utah Rare Disease Advisory Council (RDAC). She is a member of the Undiagnosed Disease Network International (UDNI). In 2016, Gina was the Chair of Utah Rare and was on the Executive Committee 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. In 2016, RUN started the international Undiagnosed Rare Disease Day (Undiagnosed Day) awareness campaign on April 29th. She was a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN) for two years. 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 a public speaker and published writer. 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 is married to Justin Zanik, the NBA Utah Jazz General Manager. Gina has brought awareness to the public about the importance of undiagnosed and rare diseases through RUN’s NBA Initiative started in 2015. She was born and raised in Madison, WI. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.
(Photo by Season Atwater Photography)