Inspired by Warner Kays’ courageous journey, the INAD Warriors, Inc. mission is to raise awareness in the global community about infantile neuroaxonal dystrophy (INAD) and the related PLA2G6 gene disorders. Through grassroots fundraising we will support families who are burdened by this diagnosis and the efforts to empower the research community to find the first approved treatments to slow progression and potentially one day cure this ultra rare disease.
CEO Organization
Infantile Neuroaxonal Dystrophy (INAD) is an ultra-rare (<200 worldwide) inherited neurodegenerative disorder. It destroys axons, the part of the neuron (nerve cell) that carries messages from the brain to other parts of the body through build up of fatty substances (lipids) on the nerves. In the beginning a child with INAD will appear to be developing normally. But around the ages of 6 months to 3 years developmental milestones will begin to slow down and regress. Some of the first signs and symptoms may be changes in a child’s vision like wobbly eye movements or squinting. Heartbreakingly, the typical life expectancy for the child afflicted with INAD is about 10 years.
INAD is an autosomal recessive disorder. This means both parents must carry the defective PLA2G6 gene to pass it onto their child. When both parents carry the mutated gene there is a 25% chance with each pregnancy that their offspring will present with the disease. A lot is still unknown regarding the genetic and metabolic causes of INAD and there is no known cure or treatment that can stop the disease from worsening.
There is no known cure or treatment that can stop the disease from worsening. Medications may be prescribed to help with symptom management of pain, stiffness, nutrition supplement needs, seizures, sedation. Supportive therapies such as physical, occupational, and speech therapy are recommended.
There are less than 200 cases worldwide.