From Hope to Reality: Celebrating Five Years of Riaan Research Initiative
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Riaan's Newsletter
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, Cockayne Syndrome. Visit our foundation page for Riaan Research Initiative at riaanresearch.org.
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Latest posts
When a Droplet Meets the Ocean
Reflections on Rare Disease and the Afterlife
This Is a Love Story
Thank you for helping us make history.
Riaan Receives First Gene Therapy for Cockayne Syndrome
A monumental advancement for the Cockayne syndrome patient community
Artemis II & An Ordinary Night
When a lunar mission collides with caregiving
Six Wonderful Years
Happy 6th Birthday, Riaan!
Our Worlds Are Equally Important
A rare mama's enlightening ride after Thanksgiving
The Myth of the Support System
Many of us claim to have one. How many of us really do?
Bermuda, You Left Us Breathless
Riaan Visits the Land of Pink Sands
The Bad Days
We Are Never Ready