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Chelsea Gerber
Challenger Baseball - Spring 2007l



"It's not what you look at that matters,
it's what you see."
Henry David Thoreau

Note to Lafora Parents - From the Doctors

Parents,
We would like to make sure that all patients have had their data recorded in our central files and that we are aware of your child's mutation information.

If you are not sure your child’s Athena lab results are in Dr. Berge Minassian’s database at The Hospital for Sick Children in Toronto please email:
 jadestone81@hotmail.com
 
In the subject line or body of the email, please mention that you are sending us your mutation information from the chelseashope.org website.

Thank you,
The Lafora Research Team

Contact Information

Chelsea's Hope Lafora Research Fund.
Walnut Creek Main Post Office
P.O Box 4953 Walnut Creek, CA 94596-0953

Email:chelseashope@gmail.com
Phone: 925-963-7122

Thank you for your interest in Chelsea's Hope.

We appreciate your support and invite you to contact us with your thoughts, ideas, comments, photos, and stories.


Howard, Linda, Chelsea and Collin - Disneyland 2006

"Incredible dreams produce incredible results."

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.

Life Lessons - contributed by Chelsea’s friends, Danielle and Alyssa

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.

  1. We've learned to appreciate the moment
  2. We've learned to stop and HEAR the music
  3. We've learned to remember to marvel at the blue sky and wonder about the puffy clouds
  4. We've learned to find something nice to say about everyone
  5. We've learned to appreciate our health and fortune
  6. We've learned that our good health IS our fortune
  7. We've learned to appreciate the gift of friendship
  8. We've learned to find joy in a smile
  9. We've learned that lime green is the best color
  10. We've learned that dogs have an innate sense of compassion
  11. We've learned to let our feelings be known
  12. We've learned to hug with everything we've got
  13. We've learned that dancing is the best medication
  14. We've learned that being fed by others is way more fun than feeding ourselves
  15. We've learned that a cute smile can solve most problems
  16. We've learned to not get embarrassed
  17. We've learned to disregard the stares of others when we act silly in public
  18. We've learned that Tinkerbell is the best
  19. We've learned that beaches are the best places in the world
  20. We've learned to not be afraid to sing our hearts out
  21. We've learned that sitting and playing board games with a friend is way more fun than going shopping
  22. We've learned that modesty is a waste of time
  23. We've learned to not be afraid to hug whenever we feel like it
  24. We've learned that the amount of friends is far less important than the quality of the friendship
  25. We've learned that happiness can make you cry
  26. We've learned to daaaaannnce to the music
  27. We've learned to never judge a book by it's cover
  28. 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!


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