Riaan's Newsletter

Jo Kaur
Sign up for our newsletter and learn more about our journey to find a cure for our son Riaan's rare, fatal, and devastating neurodegenerative genetic disease.
Created 20 Apr 2021
  • Meet our twins: Noah and Marcus
    20 Oct 2021 • 5 min read
    by Karen Jiang Karen is a medical doctor and a member of the Scientific Advisory Board of Riaan Research Initiative. Her husband, Hoong Chuin Lim, is a scientist, and also an advisor to the organizati...
  • Riaan turns 22 months-old, and we launch a new campaign: #Match4Riaan
    13 Oct 2021 • 4 min read
    by Jo Kaur I used to be so in awe of people who founded and ran non-profits. Then I became one. But honestly, while it’s a lot of work, it’s nothing that impressive. Is it? You tell me. Today was one ...
  • Microcephaly, or a small head
    07 Oct 2021 • 4 min read
    by Jo Kaur One of the symptoms of Cockayne Syndrome is microcephaly, or an abnormally small head size. When you think of microcephaly, you might think of Zika. Zika can cause babies to have tiny heads...
  • New Cockayne Syndrome Gene Therapy Project at UMass Chan Medical School
    01 Oct 2021 • 2 min read • 2 0
    October is officially Cockayne Syndrome Awareness Month in the State of New York, and we have exciting news! Today, UMass Chan Medical School and Riaan Research Initiative, a 501(c)(3) non-profit orga...
  • A Day in the Life of a Rare Disease Mom Who Runs an Organization
    13 Aug 2021 • 7 min read
    Today, Riaan turned 20 months! 20 months of joy and wonder he has brought us! So what’s a day like in our lives? I thought I’d share today, which began with a Home Alone moment. Riaan and I woke up a ...
  • Birthday Reflections
    08 Aug 2021 • 2 min read
    by Jo Kaur Lately, I’ve been plagued by a series of nightmares, each reflecting a primal, obvious, and urgent desire to save Riaan’s life. Last night was no different. They range from me running throu...
  • Let's Talk About Mice
    07 Aug 2021 • 2 min read
    by Jo Kaur These days, my thoughts are filled with mice. It all comes down to the mice. Here’s why. Mice, as it turns out, are critical in the development of a treatment. In order for us to convince t...
  • Naptime with Riaan
    24 Jul 2021 • 3 min read • 2 0
    by Jo Kaur When I was about 12 or 13, I discovered Enigma. We were visiting my aunt and uncle’s home in Michigan during the summer, and my aunt’s younger sister, who was in her 20s and so wonderful, c...
  • My baby boy has a serious, life-threatening illness. We've created a smart plan to help save his life and that of other children with his disease.
    19 Jul 2021 • 9 min read • 2 0
    (July 19, 2021) by Jo Kaur, Founder of Riaan Research Initiative and Riaan’s Mom My baby boy is dying of a rare disease with no cure. My family and I have launched an extraordinary effort to save his ...
  • Launch: Riaan Research Initiative
    21 Jun 2021 • 3 min read • 2 0
    Dear Friend: Three months ago, on a late Friday afternoon, we were hit with the worst news a parent could ever receive. Our child, our sweet and beautiful baby Riaan, was diagnosed with a severe and l...
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