Riaan Research Initiative seeks to fund treatments for Cockayne Syndrome, an ultra-rare, fatal genetic disease with no approved treatments.
$9,597
Raised
38+
Donors
0
Projects
We founded Riaan Research Initiative to find and fund treatments for Cockayne Syndrome, an ultra-rare, fatal genetic disease that impacts our beautiful two year-old son Riaan Singh and many other kids too.
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!
Our Commitment
Riaan Research Initiative is dedicated to promoting and furthering translational scientific research to advance treatments for severe and life-limiting genetic disorders. We aim to identify and facilitate projects to improve the lives of patients suffering from genetic conditions lacking approved therapies. We strive to bring together disease and translational experts with each other and affected patients, fund novel and intelligent research projects aimed at accelerating and converting medical and technological advancements into treatment, and educate the public and medical community about relevant developments. We are also a proud member of the Global Genes’ RARE Foundation Alliance.
We are not okay with the status quo. We are not waiting for a treatment someday down the road, when it may be too late. We are going to fund, advocate for, and help accelerate the development of a treatment. We are choosing to fight, with all of the firepower in our arsenal. And thus, inspired by our brave, brilliant, and beautiful son, Riaan Research Initiative was born.
Thank you for supporting our iniatitive. Please check out our website at riaanresearch.org for more information.
Updates from Riaan Research Initiative Inc’s efforts, posted on a regular basis.
