Joe Lang never expected to become a medical advocate. But when his daughter Jordan was diagnosed with a rare neurological disorder at just 10 years old, he found himself diving headfirst into the world of research, advocacy, and scientific breakthroughs. Now, nearly a decade later, his relentless pursuit for answers has led to something incredible: the first-ever clinical trial for Jordan’s Syndrome.
This rare condition—marked by developmental delays and symptoms resembling autism and Parkinson’s—affects about 350 children worldwide. But thanks to Lang’s efforts, Japanese pharmaceutical company Shionogi has announced a historic study to test a potential treatment. Over the next six months, participants will take a twice-daily dose of a drug called zatolmilast to see if it can improve cognitive abilities.
And the impact could reach far beyond Jordan’s Syndrome. Scientists believe that understanding this condition could unlock answers for other genetic disorders, making this study a game-changer for medical research as a whole.
For Lang, however, the breakthrough is personal. “If at the end of the day, with this treatment, if we can get Jordan speaking, that’s a sea change,” he said. And for any parent fighting for their child’s future, that kind of hope is priceless.
👉 Want to learn more about Jordan’s Syndrome? Check it out here.
