I’m riding once again for the Riaan Research Initiative!

On August 26-27, I’ll be cycling in Cascade Cycling Club’s Ride from Seattle to Vancouver & Party (“RSVP”). I’ll be cycling 191 miles over two days across mountain ranges, farmlands, and along the sea. This route takes place across two countries. I’m doing this to raise money for treatments for Cockayne syndrome. This year, my goal is to raise $10,000 for the Riaan Research Initiative before I cross the finish line in Vancouver. It’s a big ride with an ambitious goal, but I’m going for it and am counting on your support!

This is the third year I’ve been cycling for this cause (I also rode in 2021 and 2022). Cockayne syndrome is considered a “rare disease,” and this group of diseases affects about 30 million people in the United States. While Cockayne syndrome is rare, it’s no less devastating. It’s a fatal neurodegenerative genetic disease that impacts children worldwide, including the RRI founders’ son Riaan. To develop a cure, RRI is moving with urgency, and collaborating with dedicated experts around the world who share our values. The work of our scientific partners and collaborators is truly groundbreaking, exciting, and promising. We’re driven to save Riaan and kids like him before it’s too late.

Your donation will help fund the continued development of a gene therapy for Cockayne syndrome to potentially save children’s lives. RRI’s scientific collaborators at UMass Chan Medical School have recently established proof-of-concept in mice with severe forms of Cockayne syndrome – proving the therapy works in living beings! – and are moving on to toxicology studies.

All of this work is made possible only by donors like you. Because Cockayne syndrome is rare, there are no other drugs or treatments under development by pharmaceutical companies. Your donation may give these children, including Riaan, the only possible chance at life.

All donations in support of my ride go to Riaan Research Initiative, the first 501(c)(3) non-profit organization dedicated to the development of treatments for Cockayne syndrome, and are tax-deductible. For more on RRI’s work, visit their website at www.riaanresearch.org.

To send donations offline, please contact info@riaanresearch.org. For checks, please address them to Riaan Research Initiative, write in #ride4riaan in the memo, and mail them to:

Riaan Research Initiative
6123 224th Street
Oakland Gardens, NY 11364

Thank you for your support!