Our Story

On 1st February 2025, our lives changed forever. After more than a year of searching for answers, advocating fiercely for our daughter Mila, we were given a diagnosis no parent should ever hear:
Infantile Neuroaxonal Dystrophy (INAD).

INAD is an ultra-rare, degenerative neurological condition that affects young children. It sits under the umbrella of PLA2G6-Associated Neurodegeneration (PLAN) disorders and is part of the Neurodegeneration with Brain Iron Accumulation (NBIA) family. Its progression is heartbreaking, leading to severe loss of movement, speech, and eventually, cognitive function. In many ways, it mirrors early-onset Parkinson’s disease in children and also falls under the umbrella of Childhood Dementia.

But our story doesn’t end there. We are not giving up. Mila continues to teach us what resilience looks like, and she fuels our mission to fight, not only for her, but for the one in a million children like her.

That’s why we founded the INAD Foundation. We aim to:

• Raise awareness about INAD globally.
• Support families who receive this life-altering diagnosis.
• Fund and accelerate ground-breaking research toward treatments and, one day, a cure.

We are proud to stand beside a growing community of researchers, advocates, and families around the world. We are united in purpose and we will not stop until there is hope for every child with INAD.