Chelsea’s Hope (ChelseasHope.org) began in the fall of 2007 as a means to share Chelsea Gerber’s story with family and friends. This is was two years after she was diagnosed with Lafora disease at the age of 14. Through this website, the Gerber family has been able to help raise awareness about disease, connect with other Lafora families, and to help fund research to try to find a cure.

Our Challenge: Lafora Disease research has little to no funding from the Federal Government. This is due in part to Lafora’s classification as an orphan disease (a condition that affects fewer than 200,000 people nationwide). The other challenge is funding for Lafora research is in competition with more than 7,000 other orphan diseases. There simply isn’t enough funding to go around. Our hope is that by raising awareness about Lafora disease, we can dramatically increase the funding for research needed to find a cure.

This requires raising awareness about Lafora and the children it afflicts. Chelsea’s Hope is also here to provide connection and assistance for families in the form of education, emotional support and general assistance.