If you are here because someone you love has been diagnosed with Infantile Neuroaxonal Dystrophy (INAD), we hope you find comfort, hope, and reassurance. If you are a professional working with someone affected by INAD, we hope to be a valuable source of connection, insight, and knowledge to support your work. And if you’ve come simply to learn more about INAD, we’re grateful for your interest and we invite you to stand with us as we advocate for our children and work with the team at University College London (UCL) towards a cure. No matter what brought you here, we’re glad you came.
What is INAD?
Families & Caregivers
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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.
Infantile Neuroaxonal Dystrophy (INAD) is a rare, inherited neurodegenerative disorder that typically begins in early childhood and leads to the progressive loss of physical and cognitive skills.
INAD is an ultra-rare genetic condition caused by mutations in the PLA2G6 gene. It is inherited in an autosomal recessive pattern.
Children appear healthy at birth, but symptoms usually begin between 6 months and 3 years. Symptoms include loss of motor skills, vision and hearing loss, low muscle tone, and seizures.
Most children with the condition gradually lose the ability to walk, talk, and eat as the disease progresses. Most do not live beyond their first decade of life.
Clinical trials for INAD are extremely limited and, like many other forms of childhood dementia, it receives up to 12 times fewer clinical trials per patient than other childhood illnesses.
December 5, 2025
Disclaimer Every family’s journey with INAD and every child’s experience is unique. While our story may echo parts of others, no two paths are ever...
December 5, 2025
Disclaimer Every family’s journey with INAD and every child’s experience is unique. While our story may echo parts of others, no two paths are ever...
November 27, 2025
Hello and Welcome My name is Stephanie Taylor, and I am the proud mum of two beautiful children–my daughter Mila (2y/old) and my eldest daughter...
