INAD WARRIORS INC.

#TogetherWeFight

WE’RE ON A MISSION TO FIND A TREATMENT AND CURE

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.

Support the Cause

Building our Tribe

Driven by hope and a commitment to making a difference, we work together to raise awareness, funds research and support our warrior families. Get to know the hearts behind our mission.

Meet the Team!

Building a Community

Together, we create a strong, supportive community dedicated to raising awareness and offering hope. Join us as we grow, connect, and stand together as one tribe.

Fight for a Cure!

#INADWARRIORS

Funding Research
and Fighting for a cure

On behalf of INAD Warriors Inc., we are deeply grateful for all the support. The generosity and dedication make our progress possible as we push forward in the fight against INAD. Together, we remain committed to funding research, advancing potential future treatments, and one day finding a cure. We couldn’t do it without you—thank you for standing with us!

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3 INAD Warriors Events

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$180,000+ Dollars Raised

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345 INAD Warriors Donors

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One grant recipient awarded

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Pray for a Cure

We hold onto hope and faith as we fight for a cure for Infantile Neuroaxonal Dystrophy (INAD). Isaiah 41:10

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Attend an Event

Whether it’s a fundraiser, awareness campaign, or community gathering, your participation helps bring families together and spread hope.

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Donate Today

Together, we can make a difference—give today and help change the future.

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Connect With Us

Stay updated with INAD Warriors Inc. and be part of our mission to fight INAD. Together, we can make a lasting impact.

What is INAD?

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. Other symptoms that present over time include:

speech and vision problems,
inability to sit, crawl or walk,
difficulty holding up or controlling their head,
coordination and balance problems,
loss of cognitive function leading to dementia, and
seizures

It is a progressive disorder so over time symptoms continue to worsen resulting in total loss of vision, muscle coordination and cognition. Heartbreakingly, the typical life expectancy for the child afflicted with INAD is about 10 years.

Causes

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.

Diagnosis

Because it is so rare, and some of the symptoms are common to other neurodegenerative disorders, getting an early and proper diagnosis is very challenging. Sadly, many families will see a meaningful delay between onset of symptoms and diagnosis. This delay can have a negative impact on efforts to manage symptoms. Today the diagnosis can be confirmed through a blood test looking for two changes with the PLA2G6 gene. Other diagnostic tests include EEG for abnormal brain activity, MRI for cerebellar changes, nerve conduction tests, ocular tests and skin/nerve/tissue biopsy. Prenatal tests can also confirm if an unborn baby has inherited the mutated gene.

Treatments & Prognosis

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.

Research & Development

Researchers around the world are working on preclinical studies of potential therapies. These studies may include enzyme replacement, gene therapy or gene correction as well as potential combination therapy using medications previously approved for other indications. If successful, the next phase of development is controlled clinical trials in humans. If a promising potential treatment emerges, the drug development Sponsor may seek authorization for a Fast Track review process based on a high unmet medical need in a serious condition.

Resources

Cleavland Clinic

INADCure Foundation

NBIA Disorders Association

NIH

Rage Genomics Institute

eLife

NORD

NBIAcure

FDA Rare Disease Innovation Hub

INAD Warriors Inspiration: The Kays Family

INAD is an ultra rare progressive neurodegenerative disorder that affects one in every 1 to 2 million children. It causes the cells of the central nervous system to stop functioning leading to loss of muscle control, vision, speech and cognitive abilities.

On September 6, 2022, our son Warner was diagnosed with this devastating condition. Despite the challenges, we are determined to make something positive come from our struggle. Thank you for your prayers love and continued to support as we fight for Warner and all families impacted by INAD.

Read Warner's Story