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

Rating: 5 stars  

How blessed I felt when I found Chiari & Syringomyelia Foundation ! I knew right off that I wanted to be a part of this organization. I was diagnosed with Chiari in 1999 and was told that it would never affect me and then was diagnosed with Syringomyelia in 2010 but told again that this isn't going to affect me either. Following this I was diagnosed with Tethered Cord Syndrome and Diastematomyelia. 2012 was the beginning. Many surgeries followed to try to control this body of mine. I felt that while I was trying to educate myself it was just as important to help some of the other medical staffs that I will forever be connected with to keep me as strong as I can be. It hasn't been easy and at times I wondered how much I was being heard. As time passed I know people realized that seeing my MRI scans and explain things certain things made since. I know with me they have to step out of the box that they have done before and realize that even doctors get baffled as well as the patients themselves. CSF goals are to raise money and awareness to the medical field and to the lay to get a better understanding of these debilitating disorders!

Role:  Volunteer