Little Riaan is almost two years old. He’s the son of Jo Kaur, a tireless civil rights lawyer and a friend of mine in New York who I’ve known for almost 10 years. In March of this year, Jo and her husband Richie learned that Riaan has a disease called Cockayne Syndrome. It’s a very rare genetic disease and children who are diagnosed don’t have very long to live. By the age of five, Riaan might be facing the end of his life because there is no known cure. Yet.
I’m dedicating a bike ride to help raise funds towards getting research done that could help save Riaan’s life. I’m training to ride 164 miles in the Moab Century Challenge in the deserts of Utah over two days in September to raise $5,000 towards funding this effort.
There is one hope for Riaan: gene replacement therapy. This therapy is still in its early stages and needs research to get started now but requires millions of dollars. Jo and Richie are doing all they can to try to get this research started in time to save Riaan. They’ve launched a campaign called the Riaan Research Initiative to build a community around this research and help fund it.
This is the chance to save Riaan’s life and that of other children afflicted with genetic diseases.
Can I count on your support? Your donations are tax-deductible and will help fund bringing this cure to reality. Just click “DONATE” below, or go to riaanresearch.org/donate today. When you submit your donation, mention “#ride4riaan” in the comment box.
Every child deserves a shot at life, and it’s on us to do what we can to make that happen. Let’s help save Riaan.
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