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.