We founded Riaan Research Initiative to find and fund treatments for Cockayne Syndrome, an ultra-rare, fatal genetic disease that impacts our two year-old son Riaan Singh. Cockayne Syndrome was discovered in 1936 but it has no approved treatments. We are working to raise significant funds to finish the research projects our organization has started: creating a gene therapy for Cockayne Syndrome with UMass Chan Medical School, and working to find already approved FDA drugs that may be repurposed to halt or reverse the symptoms of Cockayne Syndrome. Because the disease is so rare, the majority of funding for treatments comes from patient advocacy groups like ours. In other words, if we don't push for treatments for our children, no one else will. We really appreciate your support! Please check out our website at riaanresearch.org for more information.