The Summary

Chelsea’s Hope was created in 2007 when Linda Gerber and a small group of dedicated friends developed a website to share her daughter Chelsea’s story. 

We continue to fight Lafora disease, a rare, fatal, neurodegenerative disorder that affects children. Simply put, we want to save our kids! 

Learn more about Chelsea's Hope. >

Our History

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. Chelsea’s Lafora story was not much different than any other child represented on our webpage. She had big dreams and deserved a better life.

Lafora disease is an ultra-rare degenerative neurological condition affecting an estimated 1,500 children worldwide. Symptoms include epilepsy, ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating. There is currently no cure; the disease is always fatal.

Since we became a 501c3 in 2009, we’ve connected the global Lafora patient community, supported families, created awareness, funded research, and maintained hope in memory of our namesake, Chelsea.

Our Mission

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the
development of treatments.

To do so, we raise awareness about Lafora and the children it afflicts. Chelsea’s Hope also provides connection and assistance for families through education, emotional support, and general assistance. We connect the Lafora research network with the patient community.

Our Vision

We envision a world where treatment options can accompany a diagnosis of Lafora disease. We
aim to reach a cure and reduce the diagnostic odyssey that Lafora patients face.