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

Rating: 5 stars  

I was diagnosed with an incurable disorder at the age of 34. The word "Chiari" entered my world and changed my life. I went from an active, teacher mom of 2 young children to a parent who struggled to stand on her own two feet. I discovered the Chiari & Syringomyelia Foundation as I researched my condition. To my delight, I found information, advocates--and new friends. I wasn't battling alone, I had a team beside me. To say that CSF has changed my life, would be to state it lightly. I have gratefully been healing from brain surgery to help with my symptoms and this allowed me to host two *unite@night* walks in my home state. Those walks brought awareness, education and research dollars to CSF--more importantly, they allowed those suffering from Chiari and its related disorders to gather together. To share our laughter and tears is the most wonderful gift. I happily volunteer as a way to give back to an organization that has given me so much. Together, we can find a cure!!!

If I had to make changes to this organization, I would...

expand the knowledge of the group to a larger community....there are so many people who can be helped. We do not have to battle alone. There is strength is our numbers.

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?


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