Chiari & Syringomyelia Foundation (CSF)
October 27, 2013
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!!!
Ways to make it better...
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.
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