Chelsea's Hope Lafora Children Research Fund

The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

Our vision is a world where there are viable treatment options for Lafora disease, even a cure.

Lafora progressive myoclonic epilepsy is a rare neurodegenerative condition affecting one in five million children. Symptoms include epilepsy, ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating. There is currently no cure; the disease is always fatal.

As the only U.S.-based patient advocacy organization for Lafora disease, Chelsea's Hope began as a website in the fall of 2007 to share Chelsea Gerber's Lafora story with her family and friends. Chelsea was diagnosed with Lafora Disease in 2005 at 15 and lost her fight in December 2016 at 26.

We envision a world where treatment options can accompany a Lafora disease diagnosis. We aim to reach a cure and reduce the diagnostic odyssey that Lafora patients face. Chelsea's Hope raises awareness of Lafora, connects families worldwide, and brings together the research and patient communities.