Ten Years Stronger. Ten Years Louder.
Ten Years of Advocacy
Ten Years of Hope, Research, and Relentless Advocacy
Together, we’ve built a global community, advanced research, and supported families every step of the way.
Together we’re proud to say:
We are ten years stronger.
Ten years louder.
Ten years closer to a cure.
Ten years ago, the words “H-ABC” were met with confusion, isolation, and heartbreaking uncertainty. For families like ours, there was no roadmap—no research, no community, and no path forward.
But we refused to stand still.
Now, after ten years of advocacy for those living with H-ABC and TUBB4A-related leukodystrophies, we have come a long way.
The journey is slow and complex—but every step brings us closer to treatments, to hope, and ultimately, to a cure.
What Families Are Saying
‘To newly diagnosed families: this is your village. The Foundation to Fight H-ABC helped get us there.’
— Parent of a 6-year-old with H-ABC
Research Milestones
Sponsored research for AAV gene therapy (now in Year 4)
Pending rollout of drug repurposing study
Supported children receiving N=1 ASO treatment
Initiated TUBB4A Natural History Study
Family Support & Advocacy
Created national family services database
ULF Ambassador partnership
Global support for newly diagnosed families
Bilingual website launched
Awareness & Fundraising
Raised up to $100,000 annually
Hosted conferences & webinars
Promoted awareness through newsletters and media
Strong advocacy with industry and rare disease partners