My husband and I are the parents of three children living with an undiagnosed rare disease. Our family lives in a diagnostic odyssey, times four, as I am also living with an undiagnosed rare disease. We almost lost our oldest daughter to a subdural hygroma in 2013, and she is now shunt-dependent.

As a family, we advocate for the 30 million people living in the United States with a rare disease and the estimated 6 million patients living with an undiagnosed genetic dysfunction. We started our grassroots nonprofit, the Rare and Undiagnosed Network (RUN), in 2014.

Basketball for a cause

When my husband, Justin Zanik, joined the National Basketball Association’s Utah Jazz as their assistant general manager in 2013, we worked to raise awareness about these rare and undiagnosed diseases by honoring the affected children during an NBA game.  In 2014, we approached the Jazz family to see if this was a possibility.

We want to connect families who may feel isolated or alone in their struggles with the global rare community, and we want the families to have fun and to enjoy the great game of basketball.

Due to the generosity of the Larry H. Miller Charities and the Jazz, we were able to start the NBA initiative for RUN.  In 2015, the Utah Jazz were the first team to have rare and undiagnosed patients on their home court for the National Anthem. The Jazz also honored children that had passed away from a rare or undiagnosed disease by holding up their photographs.

Honoring community

The event was a dream come true for our family. In 2016, five more NBA teams, the Boston Celtics, Denver Nuggets, Milwaukee Bucks, Sacramento Kings and the Washington Wizards, joined the Jazz in honoring our community.

Over the last few years, the NBA teams have embraced our community and have continued to work with us to raise awareness. In March 2018, we were blessed to not only have the children affected by rare diseases on the court for the Jazz’s National Anthem, but their families standing with them as well. I stood with my three children and members of our RUN family at center court, and it was a moment in time that I will cherish forever.

We look forward to carrying on the tradition of standing with these families on the court again in 2019. The partnership between RUN and the NBA teams was started to create awareness about rare and undiagnosed diseases. We want to connect families who may feel isolated or alone in their struggles with the global rare community, and we want the families to have fun and to enjoy the great game of basketball.

The majority of the families that participate in #RUNNBA are financially drained from years of being on a diagnostic odyssey. Through our initiative, they have the opportunity to experience the pure joy of an NBA game while advocating for their family and friends.