CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND
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Mission Statement
Chelsea's Hope is committed to raising awareness and research funds for Lafora disease. In addition we provide connections and assistance for affected families in the form of education, emotional and general support. Chelsea's Hope is the only organization of its kind dedicated to connecting affected Lafora families. There is no cure for this horrific disease and we are committed to making a difference by raising funds for medical research and awareness.
About This Cause
Lafora Disease is considered the most rare, progressive, degenerative and most severe form of Epilepsy. It is an inherited genetic disease that strikes children usually in early adolescence, 10-14 years of age. Lafora disease presents with a grand mal seizure and quickly progresses with symptoms to include continued seizures, cognitive decline, difficulty walking, inability to swallow, severe hallucinations and dementia which usually lead to death within 10 years of onset. Lafora Disease is considered an orphan disease, affecting 1 in 1 million children worldwide. Government funding for research is very limited due to its orphan status.