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Review for Chiari & Syringomyelia Foundation (CSF), Staten Island, NY, USA

Rating: 5 stars  

Growing up in a small town, my family became very close with the other residents of the town. One of the families learned about Chiari after the oldest son was diagnosed. By the time he had graduated high school he had spent more time in the OR than he did at school. Because of Chiari he was not allowed to play soccer, a sport which was a big part of his life, and he was not able to have a normal childhood because of the constant pain and frequent trips to Chicago for surgeries and doctors visits because it was the only hospital that had extensive knowledge of the disorder. This family started to grow awareness in our small town and I wanted to be a part of it because no child and no person should have to live through what this family had to go through. I have brought my passion for CSF from Cleveland, Ohio to Columbus, Ohio and will take it with me wherever I go because the more places I travel, the more people I meet who have had life altering conditions within CSF the more I want to find a cure so that every person will not have to put their life on hold for a disease.

Would you volunteer for this group again?


For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?


When was your last experience with this nonprofit?


Role:  Volunteer