Chelsea's Hope Lafora Children Research Fund

As a family-led organization, the mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

We envision a world with effective treatments accessible to all children affected by Lafora disease.

Our values are hope, perseverance, education, empowerment, and integrity.

The disease, also called 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 in 2005 at 15 and lost her fight in December 2016 at 26. Through connections with other families and researchers, we have grown into the only Lafora organization to connect the worldwide community.

Because we believe no one should face Lafora alone, Chelsea’s Hope serves as a vital lifeline and information hub for families. We provide direct, individual support and educational resources, as well as host monthly family support groups and exclusive group chats that offer a safe space for emotional connection. Finally, we host bimonthly virtual events to train caregivers and provide updates on the latest developments in research and potential therapies.

Chelsea’s Hope also serves as critical infrastructure for the Lafora research network. We unite hundreds of researchers and clinicians to accelerate potential treatments. Our Annual Science Symposium is the centerpiece of this crucial collaboration, supporting scientific advancement and therapy development.