In 2016, Jules became the sixth person in the world diagnosed with Okur-Chung Neurodevelopmental Syndrome, or OCNDS.
We left that appointment with very few answers and two words from her doctor: “Good luck.”
A lot has changed since then.
Jules is now 17. She is spicy, clever, determined, and funny. She is minimally verbal, but she has plenty to say. She loves cooking, remembers things the rest of us forget, and works incredibly hard for skills most people never have to think about.
And OCNDS is no longer where it was in 2016 either.
Today, families are connected around the world. Researchers are studying OCNDS from many different angles. We have disease models, patient-derived cells, natural history data, drug testing, and scientists working toward a better understanding of what causes OCNDS and, ultimately, how we might treat it.
That progress did not happen by accident. It happened because families participated in research, scientists took chances on a rare disorder, and people donated so promising ideas could get started.
This October, I’m raising $10,000 for Team Jules Rules through Bold Breakthroughs: Move Your Way for OCNDS.
The money we raise will help fund pilot research, the kind of early work that can answer an important question, generate the data needed for a larger study, or bring a new researcher into OCNDS.
When Jules was diagnosed, we were told “good luck.”
Today, we have something much better than luck: momentum.
And I want to keep it going. Thank you for helping do that!
