Riaan is almost three years old and lives in New York with his parents, Jo and Richie. Last year, they learned that Riaan has a disease called Cockayne Syndrome, a “rare disease” that does not give him very long to live because there is no known cure today. Children afflicted by the severe version of this genetic disease do not typically live beyond the age of five. But, Jo and Richie are working hard to change this and give Riaan a shot at life by funding the research and development of a treatment. They’re giving Riaan and other children hope, but they need our help.
Last year, I rode my bike 167 miles over two days in Utah to raise funds for Riaan Research Initiative so we can help find this cure. On September 10, I’ll be cycling in the RBC Gran Fondo in Vancouver, BC, Canada. It’s a 70 mile route from Vancouver to Whistler and it’ll involve the most climbing I’ve ever done. I’m dedicating this #ride4riaan, and I’m asking for your support once again.
The #Ride4Riaan campaign will help support Riaan Research Initiative’s existing programs to accelerate the development of treatments for Cockayne Syndrome, an ultra-rare and fatal genetic disorder. These include a CSA gene replacement therapy program at the University of Massachusetts Medical School, and drug repurposing screens at Rarebase, PBC, and Charles River Laboratories. Cockayne Syndrome was first discovered in the 1930s but currently lacks any approved therapies. It is a devastating and severe disease in children, causing neurodegeneration, microcephaly, developmental delays, liver and kidney dysfunction, and vision and hearing impairments. It adversely impacts nearly every system or organ in the body.
Riaan Research Initiative is a 501(c)(3) non-profit organization and all donations are tax-deductible. For more on their work, please visit their website at http://www.riaanresearch.org.
To send donations offline, please contact email@example.com. 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!