“Jo and the team have grown RRI faster than anyone could have imagined. It is a serious achievement to raise millions, fund research, and setup all the infrastructure necessary to build treatments. RRI is a great example of the power of patients to drive a meaningful change in society."

“Margaret Mead said, 'Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.' The same hold true for genetic diseases. Every successful effort to prevent, treat or cure genetic diseases has begun with thoughtful, committed parents, patients and families!"

"Jo Kaur did an amazing job in starting Riaan Research Initiative (RRI) and raising awareness for Cockayne Syndrome and bringing together researchers, patients and their families. Our research group is glad to be part of this community and to exchange reagents, methods and ideas to ultimately find a cure for this terrible disease."

"I am so grateful that you have found the time and energy to commit to advancing research on Cockayne Syndrome and developing a treatment for this terrible disease. There aren't many of us, and even fewer of us have the resources to fight the way you do. It gives me hope that children born with Cockayne Syndrome will have an opportunity for better treatment or maybe even for a cure."

"Our family has so much appreciation for what RRI has done and is still doing. Not everyone has the resources or the emotional capacity to be involved in research for CS. For our family, not doing anything is also not an option. We will continue to support RRI. We want to thank RRI again for their work towards finding a cure for CS."