Our Mission

About the Foundation

The Foundation to Fight H-ABC/TUBB4A was co-founded by the parents of Elouise, who was diagnosed with H-ABC in 2013. What began as one family’s fight has grown into a global movement of families, scientists, and supporters working together to change the future for all those affected by H-ABC and related disorders.

Our Mission & Vision            

Our Mission

To raise awareness, support families affected by H-ABC, and fund critical research into H-ABC and other TUBB4A-related leukodystrophies.

We are committed to ensuring that no family feels alone in this journey—and that scientists and clinicians have the resources they need to better understand, treat, and one day cure these devastating disorders.

Our Vision                                            

We envision a connected global community that transforms the lives of those affected by H-ABC through awareness, research, and unwavering support.

In that future:

  • Children with H-ABC are diagnosed early and accurately

  • Families have access to meaningful care and a strong, compassionate community

  • Researchers are empowered to pursue life-changing breakthroughs

  • And ultimately—a cure is within reach

Why It Matters                                      

H-ABC (Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum) is a rare neurodegenerative disorder caused by mutations in the TUBB4A gene. While symptoms vary, the impact on children and families can be profound—physically, emotionally, and financially.

We exist to change that story—through science, connection, and compassion.

Our Accomplishments                           

For over a decade, the Foundation to Fight H-ABC has been a steadfast advocate for families affected by this rare condition. Through tireless efforts, we’ve raised awareness, supported research, and built a global community united in the mission to improve lives and find a cure. Learn more about our journey and the milestones that have shaped our advocacy over the past 10 years.

LINK: Explore our 10 years of advocacy and progress.

Our Promise                                          

We will keep showing up—for families, for researchers, and for every child affected by H-ABC. Whether it’s amplifying voices, funding vital studies, or offering direct support, our mission is powered by purpose and community.

Uniting Families. Fueling Research. Finding a Cure.