Family Research Testimonials

“This is an ultra-rare condition affecting less than 300 individuals worldwide. We must work together to learn more about OCNDS. This is a group effort. We are trying to give our daughter every opportunity possible. We feel by participating in research we are helping the community learn more about OCNDS and in turn helping our daughter live her best life possible.”

-Jennifer, parent of Jules, age 14 with OCNDS

“We participate in research to offer hope to future families that there may be a standard of care upon diagnosis. OCNDS has a wide spectrum of difficulties, so offering information about our unique story and implications of the mutation is helping to build the bigger picture.”

-Claire, parent of Kirsty, age 11 with OCNDS

“It motivates me to participate, because I know if I enjoy learning about my daughter’s diagnosis, it can only be done if everyone contributes their information.”

-Amber, parent of Harper, age 11 with OCNDS

“By participating in research, we help pave the future for those who are just finding out about CSNK2A1.”

-Jessica, parent of Maci, age 6 with OCNDS