I am so grateful this organization exist. I was diagnosis with Chari and Syringomyelia and had no knowledge of what this was or what I should do. I did a Google search and found this organization, CSF. Just so happen CSF was sponsoring a seminar in my area that same day. I rushed to register and make it to that session. I was welcomed with open arms and received a welt of information. I even met what I have learned is the best doctor in the world for my condition. Now, I am confident I received the best treatment possible. CSF is still working hard to get this knowledge to others and help those in need. CSF is doing a great service and I am so thankful.
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.
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.
The CSF organization was there for my family & me when I was first diagnosed & suffering from Chiari symptoms following a car accident. The team there helped us with resources, they introduced us to great medical doctors & we were educated through their sponsored lectures throughout the country. I am forever grateful for all their hard work, support & love for the hurting. We may look good on the outside, but we are hurting on the inside. Thank you & God bless.
CSF is such a professional organization! They provide outstanding information about these terrible disorders (Chiari Malformation and Syringomyelia) and they are leaders in funding the research needed to find a cure!
I'm not personally affected by these disorders but I've volunteered with CSF for many years now. I've met some of the most amazing people in the process. Even the kids and families who are really struggling always seem to have this amazing drive to get through it all. To be able to see them swell with happiness when they make a valuable personal connection at a lecture, unite@night walk, or any other event always makes me tear up a little. Seeing the look on someone's face or hearing the tone in someone's voice that says "you understand what I'm going through and I appreciate that" makes it all worth it. I'm grateful that CSF and the other dedicated volunteers who tirelessly work to make it all happen can make a difference for so many people.
315 National Lectures
1.6 million people view the educational videos!
over 3 million people afflicted in the US alone!
Education, Research, Advocacy! CSF #1
CSF has made a HUGE difference in my life!! I had been diagnosed with Chiari just 2 months prior to the very first educational event in Washington DC. When I learned of the event I registered to attend. That night I met people who remain a part of my life, including the neurosurgeon who performed my decompression surgery. The group and the people who attend CSF events, are my lifelines during hard times. The research is above and beyond and I'm thankful for the advancements I've seen. Thank you CSF for ALL you do!!!!
I was hesitant signing up for my first unite@night walk with the Chiari & Syringomyelia Foundation, but it didn't take long for that hesitation to disappear. As the mother of three young children, one of which has a diagnosis of Chiari malformation and syringomyelia, and working full time plus I was concerned that I would be unable to have a successful fundraiser. It took one email from Cathy at CSF for that concern to transform in to confidence! Cathy and the team at CSF were amazing!! They took care of all the technical things that concerned me, getting the place and date and time all approved and permit applications and fees taken care of, even sending extra emails to follow up when we hadn't heard anything and then letting me know everything was all set to go. Not to mention the text messages, Facebook messages, phone calls, voice mails making sure that I felt confident and comfortable with everything for the day of my event!! I wouldn't even consider doing an event with another organization for fear that I would not have such a fantastic experience. The team at CSF is top notch!!
How blessed I felt when I found Chiari & Syringomyelia Foundation ! I knew right off that I wanted to be a part of this organization. I was diagnosed with Chiari in 1999 and was told that it would never affect me and then was diagnosed with Syringomyelia in 2010 but told again that this isn't going to affect me either. Following this I was diagnosed with Tethered Cord Syndrome and Diastematomyelia. 2012 was the beginning. Many surgeries followed to try to control this body of mine. I felt that while I was trying to educate myself it was just as important to help some of the other medical staffs that I will forever be connected with to keep me as strong as I can be. It hasn't been easy and at times I wondered how much I was being heard. As time passed I know people realized that seeing my MRI scans and explain things certain things made since. I know with me they have to step out of the box that they have done before and realize that even doctors get baffled as well as the patients themselves. CSF goals are to raise money and awareness to the medical field and to the lay to get a better understanding of these debilitating disorders!
Growing up in a small town, my family became very close with the other residents of the town. One of the families learned about Chiari after the oldest son was diagnosed. By the time he had graduated high school he had spent more time in the OR than he did at school. Because of Chiari he was not allowed to play soccer, a sport which was a big part of his life, and he was not able to have a normal childhood because of the constant pain and frequent trips to Chicago for surgeries and doctors visits because it was the only hospital that had extensive knowledge of the disorder. This family started to grow awareness in our small town and I wanted to be a part of it because no child and no person should have to live through what this family had to go through. I have brought my passion for CSF from Cleveland, Ohio to Columbus, Ohio and will take it with me wherever I go because the more places I travel, the more people I meet who have had life altering conditions within CSF the more I want to find a cure so that every person will not have to put their life on hold for a disease.