Donate to Accelerate TUBB2A Research

Jenn Gehring is organizing this fundraiser.

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Hi, I’m Jenn Gehring — a mom, advocate, and founder of the TUBB2A Foundation.

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.

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.

What We’re Raising Funds For

We’re raising early seed funds to build the TUBB2A Foundation, a nonprofit dedicated to:

Helping newly diagnosed families access support, resources, and answers

Connecting researchers to accelerate discovery and future treatments

Translating complex genetics into plain language for caregivers around the world

Building a global registry and natural history data to make research possible

Spreading awareness for this rare but devastating condition

TUBB2A-related disorder is a rare, often life-altering neurological condition that primarily affects how a child's brain develops and functions. Because TUBB2A is an essential gene for building microtubules—the structural “scaffolding” of brain cells—it impacts many parts of the nervous system.

Here’s how it typically affects children:

Brain Development & Structure

Cortical dysplasia or polymicrogyria: The brain’s surface may form abnormally during pregnancy, leading to issues with motor control, learning, and development.

Ventriculomegaly or other malformations: Enlarged brain spaces or missing brain structures (like the corpus callosum) may be seen on MRI.

Many kids have visible brain differences on imaging before they even show symptoms.

Developmental Delays

Global developmental delay is common—many children are delayed in:

Sitting
Walking (or may never walk independently)
Speaking or communicating
Some children are nonverbal or require AAC (augmentative communication tools)

“Milestones are often met on a very delayed timeline—or not at all. But families also describe deep, meaningful ways their children connect.”

Motor and Mobility Challenges

Low muscle tone (hypotonia) or high tone (spasticity)—sometimes both in different areas

Many children need walkers, wheelchairs, or supportive braces
Some have coordination issues or tremors

Speech & Communication

Most children have limited to no verbal speech

Many communicate through:
Gestures
Eye gaze
AAC devices
Apraxia (difficulty coordinating the muscles to speak) may be a factor

Intellectual Disability or Learning Differences

Cognitive abilities vary—some kids may learn letters, numbers, or signs; others need full-time assistance

Many have splintered skills—surprising strengths in memory or music, for example, paired with other challenges

Seizures & Epilepsy

Some—but not all—children develop seizures, often starting in infancy or early childhood

Seizures can be hard to control and may require multiple medications

️ Vision & Sensory Differences

Cortical visual impairment (CVI) or other vision issues are common

Many children are sensitive to:
Loud sounds
Bright lights
Certain textures
Sensory challenges can affect feeding, sleeping, and comfort

❤️ Emotional, Social & Family Impact

Children with TUBB2A often have complex care needs

Families face:

Long diagnostic journeys (often years)
Coordination of therapies, specialists, and school support
Emotional and financial strain
Sibling support and parent mental health are often overlooked but critical

A Spectrum

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.

Every dollar helps us lay the foundation for hope, connection, and progress.

How You Can Help

Please consider donating, sharing, or simply spreading the word.

Together, we can change the story for children and families affected by TUBB2A.

Thank you from the bottom of my heart,

Jenn