Our son has a disease that can be cured. We need your help.
Our son German is one of dozens of children worldwide living with HIKESHI-related leukodystrophy. We founded this organization for all of them. 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
For every child with HIKESHI leukodystrophy.
Our work serves all families affected by this rare disease — across countries, communities, and generations.
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.
A family-led nonprofit for every affected child.
The HIKESHI Foundation is a family-led nonprofit organization founded by Artem and Kristina Manilov, parents of a child diagnosed with HIKESHI-related hypomyelinating leukodystrophy. Our mission is to advance research and support families worldwide affected by this rare genetic disease — building toward the day when a cure exists for every child.
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