Friendship, Redefined: Two Teens, One Rare Genetic Condition

Jessica Ruth
Jules and Harper

By Jessica Ruth


Okur-Chung Neurodevelopmental Syndrome (OCNDS) is an ultra-rare genetic condition. While rare diseases collectively affect 1 in 10 people, OCNDS is estimated to occur in just 1 in 100,000 live births, with only about 400 identified individuals worldwide. Because of this rarity, individuals with OCNDS rarely have the opportunity to meet someone else like them.


That’s what made this past weekend so special.


In the days leading up to the Drive for Diagnosis Golf Tournament, the CSNK2A1 Foundation’s largest fundraiser of the year, two families—the Reynolds family and the Sills family—traveled in and spent time together in Southern California.


What happened during that time is something we cannot manufacture.


Two teens, spending time together—simply being with someone who understands their world in a way few others can.

Both teens have OCNDS, are on the autism spectrum and use communication devices, which can make traditional friendship building more complex. But as they sat side by side in a hotel room, baking together, something powerful became clear: connection does not require spoken language.


There is no single way to build a friendship.


When shared interests are present, and when there is a sense of safety and support, connection naturally follows. The room filled with smiles, giggles, and the computerized voice of an iPad repeating one word: “friend.”


There are no perfect words to capture the significance of being in the presence of someone who truly reflects your experience—of knowing you can show up exactly as you are, without judgment, and be fully accepted.


And maybe that’s what friendship is at its core.