The Foundation to Fight H-ABC/TUBB4A was co-founded by the parents of Elouise who was diagnosed with H-ABC in 2013.
Our Mission & Vision
Our Mission
The Foundation’s mission is to raise awareness, support families affected by H-ABC, and fund both new and ongoing 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
Our vision is to build a connected global community that transforms the lives of those affected by H-ABC through awareness, research, and unwavering support.
We envision a future where:
Children with H-ABC are diagnosed early and accurately
Families have access to meaningful care and community
Researchers are empowered to pursue 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. We exist to change that story—through science, connection, and compassion.
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.