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.
CSF has been an invaluable resource to me and it is a marvelous organization! They are at the forefront of educating, researching and bringing about awareness of Chiari, syringomyelia as well as related conditions. Having several comorbid conditions and finding them so poorly understood in the medical community, the physician lectures that are available online have helped me to understand them better and become my own best advocate. I refer others often to CSF's site to learn more - patients, caregivers and medical professionals. Funding is critical to keep CSF moving forward with the important work they do. I am honored to be involved as a unite@night walk chairperson for the past 3 years as well as becoming the local chapter representative in my area.
They helped me learn more about my condition in order to advocate for myself. They put their heart and soul into their work, and that made me decide to join them on their mission.
When I was first diagnosed with Chiari, I sought out sources of reliable information. Although I didn't come across CSF immediately I found them eventually. Their emphasis on education of the public and especially the medical field has always been encouraging. Their professionalism and focus on raising awareness is in large part why I have become an active part of the organization through hosting a loca awareness walk. I know that the money I raise is being placed into competent and caring hands. And I am confident that the people I send their way will find help as they journey through their own diagnosis of Chiari, Syringomyelia or a related disorder.
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.
I appreciate that CSF is very transparent and has received the Platinum level of Guidestar, meets the 20 standards of the BBB, and had met the HONCode certification. This is important to me as a donor and a parent of kids with these disorders.