Lenny’s
Cure for CONDSIAS
Our goal is to foster connection, build awareness, advance research and find a cure for CONDSIAS
About the Foundation
CONDSIAS (Neurodegeneration, Childhood-Onset, Stress-Induced, With Variable Ataxia And Seizures) is an extremely rare genetic disorder caused by changes in the ADPRHL2 gene. Symptoms often appear in early childhood and may include:
Episodes triggered by fever, illness, or physical stress
Loss of coordination (ataxia)
Seizures
Muscle weakness and developmental regression
Shortened life span
Currently, there is no cure. Early diagnosis and supportive care can help improve quality of life. Research is ongoing to understand the disease mechanism and develop targeted therapies.
What is CONDSIAS?
Impact & Research Updates
Stay updated on the latest research regarding CONDSIAS
Family Support
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How You Can Help
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