A Godsend. They are awesome, I know. Our daughter was recently diagnosed with Lafora. Her name is also Chelsea. I sent Linda Gerber and email and she responded in less that 24 hours. With not much information about this disease, Chelsea's Hope is the best resource we have because it is a link to real people who know what they are talking about, that also has a mission to fight this disease. Not only do the represent the only non-profit for this in America, they also introduce all of our children and fight very hard to be a voice for them. They are the strongest alliance we have against a terrible foe. If not for them we would have nothing.
They are a wonderful organisation raising money for funding for Lafora Disease a rare disease which my brtoher died from.