This is a wonderful organization! The resources, information and education are easily available and every person I have had contract with has been very professional and helpful. I refer others to the web site often and will continue to do so!
CSF is a wonderful source of information about Chiari Malformation, Syringomyelia and related disorders. This was my first year as a chairperson for the unite@night walk in my area and I could not have done it without all the help and support of the awesome people at CSF. The lectures and information videos available online are very informative and inspiring. This is a wonderful organization!
I lived 17 years w/ Chiari Malformation before finding CSF. It brought tears to my eyes to hear people talk about their experience, their symptoms, and their lifestyle with this disease. For the first time since my diagnosis, I realized I found 'my people'. That day I picked up the phone and found out how I could become involved. I conducted my first walk, in June and heard parents, kids, and adults alike share that this was the most positive non-profit walk they've ever been apart of. I love this organization and can't wait to watch it flourish.
I was told when I diagnosed with Chiari, as a senior citizen, that it was "a brain" thing. Added to the fact that it was frightening and I had never heard of it was all the negative comments on the internet in support groups. It wasn't a matter of "if I was going to die; it was a matter of when". As scary as it was, it was a relief to finally have a diagnosis. I had spent a good part of my life going from doctor to doctor and being told I had an ear infection, being given pain pills for the headaches, and having symptoms treated individually without a diagnosis. The symptoms of chiari and its related disorders are many and life changing. I became very frustrated but because I "didn't look sick" I wasn't taken seriously and it was even hinted at that I might be pretending. I would be sent home with an antibiotic or another different color pill. Even though I had multiple MRIs over the years and the right words and pictures were there (I know that now looking back), no one looked at them who was familiar with chiari and could make the proper diagnosis. It's disheartening to realize that with awareness within the medical community itself, I could have been diagnosed about 20 years ago. After my diagnosis in 2007, I was told that my chiari and basilar invagination was too risky to do surgery. I was told I was a ticking time bomb at the time. Then I got lucky, found the right nureosurgeon, had the surgery and was introduced to Dorothy Poppe and the wonderful work of the Chiari & Syringomyelia Foundation. Through them and the contacts I've made as a result of their educational, awareness, and outreach work, I have learned so much about how to deal with chiari. If I can't make the live lectures, I can watch them on line. Their help and assistance is invaluable to so many people as their effort to find a cause and a cure for these devastating illness continues. Thank you for your support of this organization that provides so much to the patients, especially through research, education, and awareness. In the last couple of years, I have actually been a patient at facilities where I no longer have to explain what chiari is to the medical team before they treat me. What a relief! When I first starting doing fundraisers for the CSF for the unite@night walk, no one I came in contact with had heard of chiari; I have seen that change over the last four or five years...........their awareness program and efforts are working.......so much so that more and more people who a meet actually know about chiari. The unite!night walk which is sponsored by the CSF is such a valuable venue for spreading the word. A teenager who was a clerk at one of the stores where I was holding a fundraiser stopped by our table last year and we talked about chiari. A year later I ran into her while shopping and she told me that she had diagnosed with chiari after she experienced the symptoms which she now knew about and could ask the doctor to test her for. Without the efforts of this much needed organization, she very well may have gone the route I did wandering from doctor to doctor without a diagnosis, not looking sick but knowing that something was terribly wrong and suffering from the daily symptoms of chiari. I thank CSF for all they do to hunt for the cause and a cure!. They are always professional, dedicated, and passionate about what they do.........a great organization!
The Chiari & Syringomyelia Foundation is a great organization to work with as a volunteer and fundraiser and as a beneficiary of their work. I have been participating in their unite@night walks for the last four years and have seen the incredible work that they do to bring awareness to communities about these conditions that are not well known to most people, not even the medical community. For the last two years I have helped organize the walk in my city, along with helping to organize multiple lectures by prominent neurosurgeons to help educate patients, medical staff and the community. The funds raised by CSF (primarily through the walks) goes largely to education and is invaluable to helping to raise awareness throughout the medical community and improving care for patients across the country. As a person with Chiari Malformation myself, I cannot stress how much I value the work that CSF does every day and am proud to be a part of their organization.
They really care about people. This organization has raised so much awareness for these conditions. They are making leap and bounds to make sure our voice is heard.
I have gone to 2 unite at nite walks and decided to be a chair person this year! I have watched several of the videos from neurosurgeon and such! I love the awareness they raise! I knew nothing about Chiari until 2012 when I was diagnosed. We need to raise awareness for Chiari and related conditions. CSF is dedicated to do just that! I'm impressed with everything about there site! Thank you.
I have done a walk for CSF for 4years. They are awesome to spread awareness for Chiari Malformation and other related disorders. Cathy is great to talk too and really understands the pain a mom goes through. Nothing is worse the seeing your child in pain and it is always great to reach out to someone who understands.
They are doing so much good in the community, educating doctors and inching their way to helping define Chiat. This is huge!
They are doing wonderful things! Raising awareness and laying community is what it's all about. Oh no, they don't just stop at research.