RIAAN

RESEARCH
INITIATIVE

We envision a world where parents have access to treatments for severe and life-limiting genetic diseases that threaten their children’s lives.

We envision a world where all of our children have a chance to grow up to pursue their dreams, to live, to love, to thrive, and most importantly, to feel and be a part of everything beautiful that life, that the human experience, has to offer.

Read our piece in SheKnows Magazine about our work to accelerate and fund treatments for Cockayne Syndrome.

A world where families’ dreams are not halted or diverted by a genetic mutation, a premature stop codon, a substitution, a deletion, a splice site destruction, an addition, a gain of protein function, a loss of protein function, a single lethal change in the over 20,000 genes in the human body, a change that permanently alters destinies, and destroys lives.

We envision a world where we conquer genetic mutations, where we turn science fiction into smart science, where we make gene replacement therapy a reality, starting with mutations in gene ERCC8/CSA, which causes a severe, lethal, and devastating disorder called Cockayne Syndrome.

We have the tools to conquer genetic disease.

This is the golden age of scientific discovery.

“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."

Sanath Kumar Ramesh Founder & CEO of OpenTreatments Foundation

“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!"

Dr. Terence R. Flotte International Gene Therapy Pioneer, Dean/Provost of UMass Chan Medical School, on Riaan Research Initiative's One-Year Anniversary

"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."

Martijn Luijsterburg, Ph.D. Department of Human Genetics, Leiden University Medical Center, Scientific Advisory Board Member, Riaan Research Initiative

"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."

Lena Dietsche Mom of Kian, diagnosed with Cockayne Syndrome

"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."

Dr. Karen Jiang Scientific Advisory Board Member, Riaan Research Initiative, mom of twins Noah and Marcus, diagnosed with Cockayne Syndrome

Let's work together to utilize scientific advancements & technologies to create therapies for Cockayne Syndrome (CSA mutations)!

OUR VISION

Riaan Research Initiative envisions a world where every child with a fatal genetic disease has a pathway toward treatment. We are dedicated to promoting and furthering translational scientific research to advance treatments for severe and life-limiting genetic disorders.

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CURE COCKAYNE
SYNDROME

Riaan Research Initiative aims to help support and fund translational research into gene replacement therapy for genetic mutations in the ERCC8/CSA gene, which causes Cockayne Syndrome, a devastating and fatal neurodegenerative disease. To learn more about Cockayne Syndrome, click here.

RIAAN

RESEARCH INITIATIVE