When Jack was diagnosed with Infantile Neuroaxonal Dystrophy (INAD) shortly after his second birthday, his parents were devastated. Going from planning your child’s future to facing the reality that you may one day have to plan their funeral is a heartbreak beyond words.

The neurologist who delivered the diagnosis admitted she had never even heard of INAD before — only that it was a rare, progressive disease with no known treatment, and that most children don’t live to see their tenth birthday. Jack’s parents fell into despair, doing their best to savor every moment with their son while he was still here.

But then came a glimmer of hope. The neurologist mentioned a New Jersey–based organization called the INADCure Foundation and encouraged the family to reach out. That connection changed everything.

After speaking with Leena Panwala, a mother whose own daughter was diagnosed with INAD at the age of two, Jack’s parents learned something extraordinary — the INADCure Foundation had spent years funding and developing what could become the first-ever gene therapy treatment for INAD, designed to slow or stop the progression of this devastating disease.

Leena explained that all the pre-clinical work had been completed, the animal studies showed remarkable promise, and a contract was already in place with a drug manufacturer to produce the treatment. The only obstacle left was funding — about $500,000 still needed to cover manufacturing costs and an additional $2 million required to enroll ten children into the clinical trial.

That conversation changed the direction of the Drury family’s lives. From that moment forward, they made it their mission to help close the funding gap and give Jack — and every child with INAD — a chance at life.