ZMYND11, a condition so rare it doesn’t have a name
We’re a family-led foundation funding research toward treatments for those with ZMYND11-related disorder.
About the condition
What is ZMYND11?
ZMYND11-related disorder is a very rare genetic condition. In 2020, fewer than 50 children had been diagnosed worldwide. That number is growing as genetic testing becomes more common and awareness spreads.
Small changes in our genetic code happen to everyone when DNA is copied. Most don’t affect genes that matter for health or development. In ZMYND11-related disorder, a change in the ZMYND11 gene (a pathogenic variant) reduces how well the ZMYND11 protein works. It can be inherited from a parent or happen de novo, meaning randomly, without being passed down.
Every child is different, and effects range from mild to significant. Common features include:
- Developmental delay
- Intellectual disability
- Speech & language delay
- Behavioral differences
- Seizures
Our research
We can change lives together
Our goal is to find treatments that improve how the ZMYND11 protein works and reduce the severity of symptoms.
We’re partnering with Unravel Biosciences to conduct a drug repurposing screen of FDA-approved medications. This could lead to relief for symptoms such as seizures, developmental and speech delays, low muscle tone and feeding issues.
Every conversation helps move research and treatment forward.
Share our story, connect with other families, or give to help fund the next study.