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<div>Hi, I’m Jenn Gehring — a mom, advocate, and founder of the TUBB2A Foundation.
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<div>Just three weeks after moving into our new home, we received life-changing news: me being laid off and after 11 long years of searching for answers, my son was diagnosed with an ultra-rare neurological condition called TUBB2A.
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<div>There’s no cure. Very little research. And almost no support. So just two days after the diagnosis, I took a leap and started this foundation — because no family should have to walk this road alone.
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<div><strong>What We’re Raising Funds For</strong>
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<div>We’re raising early seed funds to build the TUBB2A Foundation, a nonprofit dedicated to:
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<li>Helping newly diagnosed families access support, resources, and answers
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<li>Connecting researchers to accelerate discovery and future treatments
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<li>Translating complex genetics into plain language for caregivers around the world
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<li>Building a global registry and natural history data to make research possible
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<li>Spreading awareness for this rare but devastating condition
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<div><strong>TUBB2A-related disorder is a rare, often life-altering neurological condition that primarily affects how a child's brain develops and functions.</strong> Because TUBB2A is an essential gene for building microtubules—the structural “scaffolding” of brain cells—it impacts many parts of the nervous system.
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<div>Here’s how it typically affects children:
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<div>Brain Development &amp; Structure
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<div>Cortical dysplasia or polymicrogyria: The brain’s surface may form abnormally during pregnancy, leading to issues with motor control, learning, and development.
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<div>Ventriculomegaly or other malformations: Enlarged brain spaces or missing brain structures (like the corpus callosum) may be seen on MRI.
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<div>Many kids have visible brain differences on imaging before they even show symptoms.
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<div>Developmental Delays
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<div>Global developmental delay is common—many children are delayed in:
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<li>Sitting
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<li>Walking (or may never walk independently)
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<li>Speaking or communicating
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<li>Some children are nonverbal or require AAC (augmentative communication tools)
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<div>“Milestones are often met on a very delayed timeline—or not at all. But families also describe deep, meaningful ways their children connect.”
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<div>Motor and Mobility Challenges
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<div>Low muscle tone (hypotonia) or high tone (spasticity)—sometimes both in different areas
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<li>Many children need walkers, wheelchairs, or supportive braces
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<li>Some have coordination issues or tremors
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<div>Speech &amp; Communication
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<div>Most children have limited to no verbal speech
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<li>Many communicate through:
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<li>Gestures
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<li>Eye gaze
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<li>AAC devices
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<li>Apraxia (difficulty coordinating the muscles to speak) may be a factor
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<div>Intellectual Disability or Learning Differences
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<div>Cognitive abilities vary—some kids may learn letters, numbers, or signs; others need full-time assistance
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<div>Many have splintered skills—surprising strengths in memory or music, for example, paired with other challenges
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<div>Seizures &amp; Epilepsy
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<div>Some—but not all—children develop seizures, often starting in infancy or early childhood
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<div>Seizures can be hard to control and may require multiple medications
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<div>️ Vision &amp; Sensory Differences
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<div>Cortical visual impairment (CVI) or other vision issues are common
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<li>Many children are sensitive to:
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<li>Loud sounds
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<li>Bright lights
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<li>Certain textures
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<li>Sensory challenges can affect feeding, sleeping, and comfort
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<div>❤️ Emotional, Social &amp; Family Impact
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<div>Children with TUBB2A often have complex care needs
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<div>Families face:
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<li>Long diagnostic journeys (often years)
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<li>Coordination of therapies, specialists, and school support
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<li>Emotional and financial strain
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<li>Sibling support and parent mental health are often overlooked but critical
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<div>A Spectrum
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<div>Because TUBB2A mutations affect each child differently, there's a wide range of abilities and challenges. Some children are medically fragile; others are stable but developmentally delayed.
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<div><strong>Every dollar helps us lay the foundation for hope, connection, and progress.</strong>
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<div>How You Can Help
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<div>Please consider donating, sharing, or simply spreading the word.
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<div><strong>Together, we can change the story for children and families affected by TUBB2A.</strong>
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<div>Thank you from the bottom of my heart,
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<div>Jenn
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