RUN’s NBA Initiative: Utah Jazz & Governor Cox Honored Rare Disease Day, RUN & Utah RDAC
Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the Rare and Undiagnosed Network (RUN) and the Utah Rare Disease Advisory Council! It was a very special evening for all of us. It was wonderful to see our rare families. There were a lot of hugs and happy tears!
We started RUN’s NBA Initiative with the NBA Utah Jazz in 2015. As most of you know, Justin Zanik is the General Manager of the Utah Jazz. We feel so blessed for the continued support Ryan and Ashley Smith and the entire Jazz organization have given our family all of these years as we joined them in 2013. The Miller family was also very supportive of our family. We came to Utah when Ava was six years old, Oskar was four years old and Lucy was only two. Utah is our home and the Jazz are our family. So, this Rare Disease Day on the court was a moment in time that we will cherish forever.
“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 helped 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.” – Gina Zanik
Thank you all for your continued support of our family, RUN, the RDAC and the entire rare and undiagnosed community!
Much Love, The Zaniks
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)