Jo Kaur | Founder
Riaan Research Initiative

Jo Kaur is a civil rights attorney turned drug developer. Jo’s story is a mother’s fierce fight to prolong her son Riaan’s life and to build treatments for Cockayne syndrome, a fatal genetic disorder that causes profound neuronal loss and early childhood death. Riaan was diagnosed with Cockayne syndrome Type II, the most severe form of the disease, for which there are currently no approved treatments and only a small number of affected children worldwide. Following Riaan’s birth, Jo became his full-time caregiver. In June 2021, just three months after his diagnosis, she launched Riaan Research Initiative, the first nonprofit organization committed to developing treatments for this devastating disease. Jo is collaborating with UMass Chan Medical School to advance a gene therapy program for Cockayne syndrome and has worked with researchers around the world to pursue drug-repurposing partnerships. She has collaborated extensively across academia and industry in her relentless pursuit of treatments, from securing rare mouse model embryos in a laboratory in Switzerland to raising more than $4 million in short order to accelerate preclinical development. Prior to entering drug development, Jo successfully litigated high-profile cases against major employers and government entities to protect the civil rights and liberties of her clients. Today, she brings that same relentlessness, strategic rigor, and refusal to accept “no” into the orphan drug ecosystem - building credibility and collaboration without traditional institutional backing.