Welcome to #Iron4Riaan:
An IRONMAN Challenge to Advance Treatments for Cockayne Syndrome

Meet Steve Blake
Freddy's Dad, and Triathlete Extraordinaire

IRONMAN 2026: On November 7, 2026, Steve Blake, father of Freddy, a joyful, fun-loving, and brave little boy diagnosed with Cockayne syndrome, will embark on a Herculean challenge along Florida's Emerald Coast: a full-distance IRONMAN.

And he's doing it for Freddy, Riaan, and children around the world living with Cockayne syndrome. Welcome to our first annual #Iron4Riaan.

In a single day, Steve will attempt a:
🏊 2.4-mile swim
🚴 112-mile bike ride
🏃 26.2-mile marathon
140.6 miles in all for children diagnosed with CS.

WHY HE'S DOING THIS: Steve has spent five years training and competing in triathlons and endurance events. But this race is different. This one is personal. After Freddy was diagnosed with Cockayne syndrome in 2023, in their search for answers and hope, Steve and his family found Riaan Research Initiative.

“This year, I decided to take on the challenge of my first full-distance IRONMAN and use it to support something that means a lot to me and my family. I want to raise funds for treatments for this disease that affects my family and many others around the world. My hope is to one day do a race with my son, if he chooses to.” 
- Steve Blake

For Steve, these 140.6 miles represent something much bigger than an IRONMAN finish line. They represent hope for Freddy, Riaan, and every family living with Cockayne syndrome.

Riaan Research Initiative is working to accelerate gene therapy treatments for Cockayne syndrome and expand access to children who need them. On November 7, Steve is putting his endurance behind that mission.

Support Steve and RRI today. #Iron4Riaan