Who We Are

We are friends and family of Chelsea, a beautiful 19 year old girl who has been stricken with a malicious disease known as Lafora.

Lafora strikes kids in early adolescence and takes healthy, functioning children down a path of horrible seizures, loss of cognition, dementia, and, eventually, death.

There are no words to make the description of Lafora easier to stomach. Imagine, one day getting a call from school or camp or a neighbor, saying that your daughter or son had a seizure out of the blue. Imagine hoping that it was a one time, unexplainable incident only to realize that it was just the beginning of a hard to diagnose disease. Imagine the journey of taking your child to endless doctors, praying for someone to name the disease and prescribe the treatment only to be told that the disease has no treatment- only a progression of symptoms and a deterioration of your child’s life.

Lafora is a rare, orphan disease and therefore gets no federal funding to speak of. Researchers are at a pivotal point in their exploration of Lafora. In order to find a cure, we are trying to aid the researchers by raising the funds necessary to facilitate their research.

Chelsea’s future, and the future of so many other children, is dependant on the dollars you and others provide.

Our wish is that as you look through our site, you will help us achieve Chelsea’s Hope: A day when the diagnosis of Lafora actually means a treatment plan that will allow for dreams of tomorrows that are endless and smiles that are contagious.