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, Chair, Utah Rare Disease Advisory Council; Founder and Executive Director for the Rare and Undiagnosed Network (RUN),
Thank you all for your continued support of our family, RUN, the RDAC and the entire rare and undiagnosed community!
