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.
While dealing with an increase in symptoms for syringomyelia went looking for current information and found CSF. I have been impressed with their organization! When you have a rare disease it is hard to find up to date information. In most cases it is hard to find or understand for many patients. Their site has many useful videos and written explanations for those newly diagnosed or like I was seeking current information. Wish something like CSF was around 37 years ago when I was diagnosed! My hope is to become more invovled with this organization to help pave the way for a cure and better diagnosis for future generations. Information Awareness Education three important principles supported by this amazing organization. #SmashSM
I first became acquainted with the CSF at a quarterly educational meeting and lecture that was held in Maryland. As a patient and sufferer of Chiari Malformation , I am so thankful for all the CSF is doing to raise awareness and education for these diseases. This is a truly great organization, and I know they will continue to do great things!
I am only 14 but I was diagnosed with Chiari Malformation and Syringomyelia July 2013! I had no idea of both of these conditions or that they even existed! I then had surgery for chiari and syringomyelia on 14 October 2013. As an adolescent growing up with friends that were all perfectly healthy it can be tough. I thought I was alone in the world. I am very inquisitive so I tried to look at other people stories and their understanding of how to cope with this. When I came across the Chiari and Syringomyelia Foundation (CSF ) I was beyond delighted they do great work to help find a cure for this agonizing painful condition. I really wish there were more foundations like this for Chiari and Syringomyelia as no one will fully understand how it is living with this. Some days can be better than others but sometimes you can loose the mental stability to live! This foundation should be fully credited they raise money for a condition most people would turn a blind eye to as they can't see the suffering from the outside! I live in the Northern Ireland that's how far this foundation has made an impact and one day I hope to attend a walk with this foundation!
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!!!
I began working with CSF two years ago as a Steering Committee member of the Bobby Jones Classic for CSF at Bobby Jones' home course, East Lake Golf Club, just outside of Atlanta, Ga. We are now in our third year of the Bobby Jones Classic for CSF and I am more impressed each year with the foundations personal attention and determination to find a cure for Chiari and Syringomyelia.
I was recently asked to join the board and subsequently was nominated as the foundations Treasurer. Working with this group gives me hope and confidence that there is a cure for these disorders and we will soon be able to relieve the pain and suffering caused by Chiari and Syringomyelia.
As a Board member, I have had the privilege of working with the staff and other volunteers within CSF. The organization is so focused on finding a cure for chiari and syringomyelia that I believe it will become a reality! It is a blessing to be a part of such a wonderful community of people who strive each day to make difference in this endeavor.
My Name is Joyellen Sanders. My husband and I were a coordinator for a walk this year. This organization was always there to help us and others like us. They were very informative and made everything easy. Friends and Family have told us how much they loved the walk and how much they loved the things that CSF had available for us at the walk. There were informative signs about our condition and related. Registration was easy. Even after the walk, CSF has continued to stay in touch to make it better for all.
My name is John Wojtila from Euclid Ohio. I've attended many functions over the past years sponsored by this Foundation and they have all been educational, informative and help bring awareness to these conditions. I have supported this group and will continue to do so as they work to sponsor research necessary for the future to combat these conditions. The Foundation is professionally managed and organized with a clear focus on its Mission. The goals of this Foundation are crucial, important and noble. Congratulations Chiari & Syringomyelia Foundation.
I have been associated with CSF, Inc. since its inception. The dedication and hard work of the administrative staff, Executive Director, and Board members are among the finest group of individuals I have had the privilege of working with throughout a long professional career.
My name is Jade & I am from Melbourne, Australia.
& although this is an American organization, it really does help everybody.
I suffer from both Chiari malformation type 1 & syringomyalia.
I was diagnosed at age 3 & had my first surgery at age 4.
We need awareness, globally. I can't tell you how much it would mean to every chiarian, family member & or friend of a sufferer, to have this as global knowledge.
You have my support & support from many within 'my' Australian support group (on Facebook)
Our members often use the 'Chiari & Syringomyalia foundation's site to gain additional knowledge & to know we are not so alone.
I have Arnold Chiari Malformation which is a rare brain disorder that is congenital. It is being diagnosed more and more as information such as provided by this organization is being better known by physicians and the public. I live in a small town and two people in my town and a small child in a nearby town have been diagnosed since I have 8 years ago.