Our son has a disease that can be cured. We need your help.
HIKESHI-related leukodystrophy threatens the lives of Ashkenazi Jewish children. The science exists. The cure is within reach.
Founded by Artem Manilov and Kristina Manilov.
"In 2017, we received a diagnosis that no parent should hear. Today, we're working to make sure no other family has to."
— Artem & Kristina Manilov, Founders
A rare disease with a clear path to a cure.
HIKESHI-related hypomyelinating leukodystrophy is a devastating genetic disease that primarily affects children of Ashkenazi Jewish descent. Caused by a mutation called Val54Leu in the HIKESHI gene, it destroys the protective myelin coating around brain cells and makes affected children dangerously vulnerable to fevers — even a common cold can be fatal.
Learn more about the disease
Three things we're working on.
Connect families
Find and unite the families affected by HIKESHI-leukodystrophy worldwide. We are stronger together.
Fund research
Our goal is to channel funding to the research that can deliver a gene therapy treatment.
Raise awareness
Educate the Ashkenazi Jewish community and advocate for inclusion of HIKESHI in standard genetic screening panels.
What's happening in HHL research.
We track and report on every published study. Independent journalism — we are not affiliated with the researchers cited.
Are you a family affected by HIKESHI?
You are not alone. Other families are out there. We're building a network so we can support each other and speak with one voice. If you have a child diagnosed with HHL, or you're a known carrier, please reach out.
Join our family network