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Peg_9

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2 reviews

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

Rating: 5 stars  

Chiari & Syringomyelia and I have been working together for a number of years, sharing a goal of promoting awareness and educating the public and medical community about Chiari and syringomyelia. I am one of many people whose lives have been profoundly affected by Chiari.
I was forced to retire early and go on disability, a bitter pill to swallow. Every aspect of my life was affected by pain and mobility problems. Previously I was active as a volunteer in my community and profession. I reduced my many activities to two, my church and Chiari advocacy.
CSF gives me the ability to still use my leadership skills, while providing programs and support that reduces my fatigue and gives me emotional support when things get overwhelming. Their staff members are also physically there for us when needed. I remember being in Washington D.C. and becoming disorientated to the point I could not do my presentation when we reached the legislators office, the CSF representative stepped in, found a comfortable position for me, asked for cold water for me and explained that she would speak while I recovered. None of the legislative aides that we spoke to that day had ever heard of Chiari or syringomyelia. That is too often the case, which is why CSF and I are fully committed to spreading awareness. Unfortunately many n the medical community were not well educated in Chiari and syringomyelia, resulting in misdiagnosis and delayed treatment for many people including myself. My symptoms of excruciating pain, balance problems, trouble focusing, bladder and swallowing problems started in 1995. I have been misdiagnosed five times.
CSF helps people to easily understand the conditions. Support groups, national fund raising walks, regional conferences, online videos and so much more are provided. One of the advantages of CSF is the ease of using provided programs and materials.
I hope to be working with CSF long into my future and encouraging others to join forces with us.

Role:  Volunteer
 

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

Rating: 5 stars  

CSF has provided high quality, relative and timely educational programs. The programs are made live on social media to reach members everywhere. The CSF Unite @ Nite Walks have raised awareness about CHiari, a relatively rare neurological disorder and all the associated disorders, across the USA. CSF provides a great guide so that members who are suffering symptoms of CHiari and want to chair a walk or event can do so with the least stress possible. Walk supplies are mailed to chairs and advice is always available online or by phone. CSF strives to work with other organizations doing joint programs. Research is ongoing.

Role:  Volunteer