Riaan's Newsletter
Riaan Research InitiativeSign 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.
| Platform |  | Pricing | Only free issues |
|---|---|---|---|
| Publishes | Weekly | Issues | 59 |
| Subscribers | Read | riaanresearch.substack.com |
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Latest Issues
Recent posts by this newsletter. Browse the email archive.
The Magic of Faith
Faith Marie Johnson was born on August 1, 2020 in Winchester, Virginia, and passed away on February 22, 2025 in Charlottesville, Virginia.
Rare Disease Day Updates
“Yesterday is today; the past returns; the future has already happened.” \- Octavio Paz
Two Moms Take a Walk
Riaan, being lifted up by his dad, on the beach
The Big 5: Happy Birthday, Riaan
#### Happy 5th Birthday, Riaan! Send a birthday message to Riaan through his Kudoboard here. Riaan and his entire family deeply cherish and thank you for your kind sentiments.
Authors
The writers behind this newsletter.
Hunting for cures for life-limiting genetic disorders, starting with Cockayne Syndrome.
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