Rene King lives in southcentral Alaska with her husband, Troy, and their two adult children. Troy has served in the armed forces for 25 years and Rene is Founder and CEO of All Things Kabuki, a non-profit patient advocacy organization. Both had little experience with rare disease until their daughter Rikki was born in August 2001. Rikki spent her first six weeks in the NICU and was discharged without a diagnosis. In November 2001 Seattle Children’s clinically diagnosed Rikki with Kabuki Syndrome, a rare genetic disorder, then thought to affect only 350 people in the world. The King’s participated in research opportunities in 2003 and a decade later, that banked blood would confirm Rikki had a malformation on the KMT2D gene, changing her clinical diagnosis to a genetic diagnosis.

With little resources, no social media and a spouse deployed for extended periods of time over several years, Rene focused on keeping Rikki as healthy as possible, only learning bits and pieces about Kabuki Syndrome once a year when their geneticist would fly up to Alaska. In 2012, two years after joining Facebook, Rene began connecting with families raising children with Kabuki Syndrome across the globe. Eleven years after her diagnosis, their lives were forever changed, they found their tribe. Rikki experiences intellectual delays and every organ in her body has a mild to moderate impairment. Despite the obstacles she has faced since birth, Rikki loves life and is a friend to everyone she meets. Rikki is 1 in 32,000 born with Kabuki Syndrome.