More About Us

We are friends and family of Chelsea, a beautiful 17 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.

We entered Chelsea's life after she was diagnosed; after many of her long time friends had disappeared. Admittedly, it is hard to consider friendship with someone who is seriously ill, someone who has suffered from some loss of cognition.

What began as a gift to Chelsea, however, turned into countless, unending presents for us.

Knowing Chelsea and spending time with her has been one of the best things we have ever done. She is a wonderful and warm human being whose smile lights up entire rooms and we are thankful to her for being our friend. These are some of the things that we have learned from Chelsea.

We've learned to appreciate the moment We've learned to stop and HEAR the music We've learned to remember to marvel at the blue sky and wonder about the puffy clouds We've learned to find something nice to say about everyone We've learned to appreciate our health and fortune We've learned that our good health IS our fortune We've learned to appreciate the gift of friendship We've learned to find joy in a smile We've learned that lime green is the best color We've learned that dogs have an innate sense of compassion We've learned to let our feelings be known We've learned to hug with everything we've got We've learned that dancing is the best medication We've learned that being fed by others is way more fun than feeding ourselves We've learned that a cute smile can solve most problems We've learned to not get embarrassed We've learned to disregard the stares of others when we act silly in public We've learned that Tinkerbell is the best We've learned that beaches are the best places in the world We've learned to not be afraid to sing our hearts out We've learned that sitting and playing board games with a friend is way more fun than going shopping We've learned that modesty is a waste of time We've learned to not be afraid to hug whenever we feel like it We've learned that the amount of friends is far less important than the quality of the friendship We've learned that happiness can make you cry We've learned to daaaaannnce to the music We've learned to never judge a book by it's cover We've learned that the world would be a horrible place without cute boys

We've learned that anyone who doesn't love pickles is CRAZY!

and finally...

We've learned that our world has expanded so much since Chelsea chose us as her friends!