Gerstmann Straussler Syndrome

Hi Everyone,
My name is Sabrina, I am 25 years old, & I have Gertsmann Straussler Syndrome. I was diagnosed 2 years ago & have been hitting brick walls every since. I am enrolled in a research program with UCSF, but they no longer have funding to cover travel expenses, wich is around $1000 a person for us to fly out & stay for the 4 days required for follow up tests. Since I am so young, I am having a hard getting medicaid to be able to see a neurologist. I can't even go to the doctor routinely because of the cost. If anyone has any suggestions or knows of any organization that may help with travel expenses, please let me know. My sister went with me to get tested but she wasn't ready for her results, so she didn't return with me to get mine. Also, My brother who is now 20 wants to get tested, he was under age at the time my sister & I went. We are all now wanting to go back- me to be re-evaluated, my sister to get her results, and my brother to get tested. If you know of anyone who might be willing to help please contact me @ sabrinawalston@yahoo.com

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