It’s the most inherited cause of mental impairments such as autism.
“We started searching for a cure and learned pretty quickly there wasn’t one,” Justus said. “That’s kind of how we began our journey.”
The condition is particularly debilitating for males—less than 10% of men with Fragile X achieve a high level of independence in adult life, compared with 44% of women.
Two years ago, Justus founded Friends for Fragile X, an OC-based nonprofit aimed at raising awareness and providing financial assistance to support research and aid individuals and families affected by the condition.
He also holds a board seat at the National Fragile X Foundation.
The Justus family throws an annual “Red, White and Blue” Labor Day party at their home in Coto de Caza, with cover bands, food stations, and top-shelf cocktails donated by London-based distributor Diageo PLC.
All the proceeds benefit Friends for Fragile X.
Justus wanted to talk about Fragile X, his son’s plight and a national conference planned to be held in Anaheim next year as part of his acceptance speech at the CFO of the Year Awards dinner at the Hyatt Regency Irvine.
But he didn’t want his emotions to get the best of him.
“It’s difficult for me to talk about,” he said. “That’s why I didn’t go there.”