About Jo Kaur and Richie Digeorge

Our names are Jo Kaur and Richie Digeorge, and we live in New York City. We are the proud parents of Riaan, our radiant and enchanting four year-old, and the most loving, social, kind, calming, and funniest little boy in the world. No matter what time it is in the day, or how he may feel, Riaan is the life of the party, with a bright and beautiful smile and an unforgettable laugh that mesmerizes all who meet him. We were absolutely devastated when at 15 months-old, our beautiful Riaan was diagnosed with Cockayne syndrome, a severe and fatal autosomal recessive genetic disease. We knew we had to act fast, and three months after his diagnosis, we founded Riaan Research Initiative, a 501(c)(3) non-profit organization with an exclusive mission of getting treatments developed for this disease. Through this work, we have created strong bonds with other families within the Cockayne syndrome community, and have partnered with scientists around the world committed to our shared goals. We are proud to collaborate with UMass Chan Medical School, the labs of Miguel Sena Esteves and Rita Batista, to help develop the world's first gene therapy for CSA/ERCC8 mutations which cause Cockayne syndrome, and are racing against the clock for Riaan and other children diagnosed with the syndrome. In 2022, we were grateful to be able to expand our family with the addition of Riaan's jovial little brother Jivan, nicknamed Lulu. Riaan and Lu make an amazing dream team, and the four of us are trying our best to enjoy every moment, live and love as fully as possible, and work hard to help support the scientists at UMass who are building lifesaving treatments.

 

Please visit our foundation website at riaanresearch.org and donate today at riaanresearch.org/support.

To learn more about Cockayne syndrome, check out the following patient-advocacy and support organizations and resources: