The Bobby Jones CSF has helped my family through so many health challenges by providing educational videos and support groups. There is no other organization that has helped as much as this one. The research and education that they are doing gives me hope that perhaps someday my grandchildren will have medical providers with the knowledge to diagnose and treat them before the damage is irreversible. Thanks so much for your dedication and hard work!
The Bobby Jones CSF has provided valuable education and support when I was desperately seeking help for my daughter and not finding the information I needed elsewhere.
The Bobby Jones CSF has been amazing for my family. We are beyond grateful for the amazing research, the education and support for patients, caregivers and physicians, and the advocacy for all of us who suffer with these illnesses. The educational lectures have been incredibly helpful for our doctors who don't quite understand our illnesses. They are also extremely helpful to the patients and our family members who are attempting to understand our complicated health.
It is really difficult to be an adult diagnosed with a rare disease, but when your kids suffer as well you can feel so alone and helpless. The Bobby Jones CSF has connected us to other families who understand our struggles and have made our family feel like we are not alone. The support groups have connected us to other families who started as strangers and have now become friends.
When you are diagnosed with a chronic illness it can be difficult to make sense of your pain and often makes you question your purpose. The Bobby Jones CSF provides opportunities for patients to join in with advocacy such as unite@the hill and the unite@night walks. These opportunities can often make patients feel as if they have a new purpose. Through the advocacy opportunities that the CSF has provided my boys have learned how important it is to fight for their health and to take part in fighting for change. They have also become better public speakers by going outside their comfort zones and telling their stories at events and have met some amazing peers who can relate to what they have been through. These life lessons are priceless and have been a silver lining to a terrible illness.
Our family is extremely grateful for all the hard work of the Bobby Jones CSF. They have been the light on what started as a dark journey.
I have learned so much about Chiari Malformation through the Bobby Jones CSF Organization. The Unite at Night Walk is my favorite event with this organization. I’ve also been able to go to lectures , in person and virtual, which has helped me learn so much more about Chiari Malformation
I’ve learned so much about Chiari through CSF. The Education they put out is up to date and accurate. I’ve been to one of their lectures with a Neurosurgeon and was fascinated from start to finish
Csf has educated me, my family, my walk guest and plenty of others with research, lectures, brochures, and many more resources. The people who run this organization have lifted my spirits while struggling and supported my overall wellness. I have made many lifetime friends and aquaintances through them and will forever be grateful I stumbled across their website in the wake of my illness.
Our son was diagnosed with Chiari and Syringomyelia. We are thankful that we found Bobby Jones CSF, an organization shedding light on these life-long conditions. The videos and physician lectures offer great education and awareness. Keep up the good work!
Such invaluable information and resources. I finally found a support group as well with them. I am so thankful for Bobby Jones CSF!!!
Bobby Jones Chiari & Syringomyelia Foundation was the answer to years of searching for answers no one had. The foundation is a treasure trove of information that is not only easy to understand, but for us, it was the link to communicate to those in the medical field trying to help care for us as well. This foundation has helped our children's pediatricians understand how to best help with their care. As a mother with these conditions, this foundation has been an answer to prayer for support, for the community, for education, and for the hope that better treatment and answers are out there.
My name is Nichonar and I was diagnosed with Syringomyelia in December 2016. I found this Foundation via a Google search, after being urged to find help for my condition. The first event that I attended was their "NYC 4 CSF" event in New York City. I didn't really know anything about my condition or even what to expect at the event, but it turned out to be a great event - the event was packed with people who also have Syringomyelia, as well as many others. I never felt so supported before - living with this condition and trying to find and receive support from people is very difficult, but the Bobby Jones Chiari and Syringomyelia Foundation (it is now re-branded to this), is a leader in providing research, educational videos and virtual support meetings. I have attended other events and found them to be fun, relaxing and, honestly, good for the soul. Through their events, I also met several doctors and other medical professionals who, through one-on-one discussions, have provided valuable information about their experience helping patients with these conditions. Though we are all struggling in our daily lives to live with these conditions, it is so important to connect with others to learn more and to just know that we are supported - that is a key component to the work of the Bobby Jones Chiari and Syringomyelia Foundation. Further, the ladies that handle the many aspects of the organization are very helpful as well. I wish whoever is reading this the best for their health and wellness.
I'm a survivor. Of alcoholism, valley fever, fungal meningitis, and syringomyelia.
I was diagnosed in late 2016. Syrinxes were causing numerous symptoms: numbness in hands and feet just kept getting worse. Occasionally lightning bolt type sensations hit me without warning. In January 2017 I had the first surgery to remove 2 syrinxes and then in March they removed 1 more.
The Bobby Jones Foundation gives me hope that progress is being made in curing this disease and they are educational.
When a family is new to our co-morbid medical conditions and they are told "it's just a syrinx, nothing to worry about." What would you like to share with this family and suggest for rule out testing before making a solid decision in what direction to fallow up on?
I have Chiari Malformation and Tethered Cord. I have had r surgeries done by the best Neurosurgeons Dr.s Milhorat and Bolognese. I am always interested in groups who support research and assist patients.
This foundation is so wonderful and amazing. They do so much for everyone and do everything they can to make sure there is awareness and information for those in need. I am so grateful that this organization exists! Our daughter and myself suffer from Chiari, this organization has provided information and peace of mind to our family!
CSF is an amazing organization that brings education and awareness to the public. I will always use them as a reference for any questions I may have.
I became aware of the Bobby Jones CSF after being diagnosed with Ehlers Danlos Syndrome and Syringomyelia. I don’t know what I would have done without the information provided on their website. I’ve since seen several doctors who are part of the medical advisory board and watched numerous lectures from leading experts on the BJCSF YouTube channel. I’ve become a more informed patient and have been able to better advocate for myself and my children when seeking medical care. I believe the work being done by the foundation is so important that I have now attended two conferences and spoken with congress members at their unite@theHill event. They are the only organization in the world that I know of that provides the depth of knowledge about Chiari and Syringomyelia, as well as the resources needed to live day to day with these conditions.
There are SEVERAL Chiari, Syringomyelia, and related disorders foundations out there, but NO OTHER has the credentials, experience, and dedication Bobby Jones CSF has!! They are the epitome of a great, hard working foundation on the behalf of patients and their families!! They go the extra mile to be transparent, to make sure everything is correct. We feel so strongly about their good works, our yearly gifting goes to Bobby Jones CSF!!
This foundation, hands down, does more groundbreaking research, education, and advocacy than any other in the Chiari community. Volunteering amongst these ambassadors has been the most rewarding thing I have done to date. I couldn’t have chosen a better organization to dedicate my time to - one I know that is impacting my children’s fight each day. I’ve made incredible friends along the way, which I am forever grateful for. Obtaining a support network of friends when the disorder is blind can be near impossible if they haven’t seen what you have from the inside out.
When your child has a chronic, debilitating disorder, you feel helpless. Looking for how to help, I researched all of the Chiari nonprofits that are currently in existence. I looked into what they provide to the Chiari community as a whole. Where did the funding go? Was it made public? What boards exist and who are a part of them? What specialists back the foundation?
I looked into what they provide educationally and resource driven, for both those new to Chiari, and those who’s lives are affected daily. What events and fundraisers are held to allow you to be part of a supportive community? What ways do they incorporate volunteer advocating? Are they in touch with our lawmakers to acquire funding needed for research and education? What is their outlook and support of clinical trials?
This was the only foundation that met everything I was looking for and more. I’ve not only learned an extraordinary amount by attending unite events, but from attending educational lectures and watching the events I cannot attend.
I’m so grateful for all they’ve done and continue to do. They have my support 100%
If you, or someone you love has Chiari or a comorbidity of the disorder, this is the foundation you need. Be it volunteering your time, monetarily, or simply utilizing their resources.
This year I had the pleasure of being the walk chairperson for Charleston, SC. It was our first walk and we had a great turnout! We raised about $5,000 for the Bobby Jones Chiari and Syringomyelia Foundation. Through the events and lectures presented by the foundation I have been able to share my knowledge, be a patient speaker, learn from other patients, and find my zebra family. These are lessons and friendships that will last a lifetime and I love being able to work with these wonderful people!
I was diagnosed in 2015 with Chiari and in 2017 I had decompression I made a promise that no matter what life throws at me I will dedicate everything I have in me to spread awareness!!!!! October 5, 2019 was my third Chiari walk. I'm so proud of my self and those who have committed to raise awareness!!!!!
The love and support our family has received from everyone at the Bobby Jones Chiari & Syringomyelia Foundation is AMAZING! It is wonderful to have built lifelong friendships with other families living with these disorders.
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!!
This organization is amazing! They provide FREE information to everyone available 24 hours a day, 7 days a week. The programs at Bobby Jones CSF educate physicians and patients. No other Chiari, syringomyelia, EDS, Dysautonomia organization comes close to providing and sharing resources!
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
The Chiari and Syringomyelia Foundation was and continues to be an invaluable source of information and resources to me, as a mom of a child that was diagnosed with Chiari Malformation.
My son had developed symptoms and complications associated with complex Chiari, and facing a diagnosis and need for urgent surgery, I was desperate for information, references to research, and referrals to physicians. CSF provided all of that, presented in a way that was accessible to families and laypeople outside of the neuroscience field. I’m a scientist and so I also appreciated the references to the current research and the candid and compassionate communications (written, videos from seminars) and references to CSF sponsored projects (genetics studies).
It turned out the surgeon who ultimately was my son’s surgeon (Dr. Iskandar, U of Wisconsin) is on CSF’s advisory board. This connection and engagement of Dr. Iskandar with this quality organization helped increase my confidence in the care we were to receive.
My son is doing wonderfully. I’m so grateful for CSF for the work they do and the variety of impact they have funding research, communications, and connecting families with different resources. I highly recommend this organization for recognition and support. These conditions need more awareness and funding for families and patients to enable them to be as informed as possible and ultimately thrive. Thank you.
I recommend CSF for information. I believe in them so much, that I have become a volunteer to host an annual walk. They strive to bring awareness and research to al communities.
In 2009 my son was diagnosed with Chiari. CSF was one of my go to sites to get information. We host a walk every year for them. I highly recommend working with this group. They are quick to respond to questions.
After my daughters diagnosis in 2012 of Chiari, Syringomyelia and a pituitary tumor I was desperate to lear more so I could help her find the best care possible. After talking with them we decide to host a CSF Unite at Night Walk...working with Cathy Poznick was great and her passion to find a cure is evident in all she and the others do that make up the team of professionals at CSF. I have referred many newly diagnosed individuals to their site and they were well informed and grateful!
CSF has been a great resource for me as. a patient and is a pleasure to work with as an organization.
When my daughter was diagnosed with Chiari and syringomyelia 4 years ago I was totally overwhelmed and was desperate to find information to help me to better understand the condition. I very fortunately stumbled upon the CSF website which has proven to be an incredible resource. The physician education videos are a wealth of information. They do a great job of staying relevant and current and are continually providing new information. As a parent trying to make difficult decisions for my child's treatment I feel that the resources available have allowed me to better understand the condition and therefore ask better questions when meeting with her medical team. By generating research for further advancement and tirelessly working towards educating the medical community on this condition they are doing a fantastic job of helping patients and their families navigate this challenging diagnosis.
CSF has been around for a while now and are helping other group learn to lead as well.
True dedication for the Chiari community.
CSF gave us the tools and resources to find the best medical team for our family. They continue to perform much needed research and hold many lectures throughout the country each month. We would have been lost without CSF.
A fantastic organization with caring staff who go above and beyond in support of those with Chiari & Syringomyelia.
Working with the CSF team day in and day out and volunteering for the group from its inception, it is clear that this group truly cares and is so passionately invested in their mission. This makes for an incredible working environment, personally.
I was initially dx'd with Chiari 1, and decompressed as such. However, I actually had an Acquired Chiari 1.5, secondary to Intracranial Hypertension. Because I was decompressed and the pressure was allowed to remain from above, I developed a dural leak (pseudomeningocele) and a significant brain slump. Two years later, the unaddressed psuedomeningocele escalated, and I had a Subgalealperitoneal (SP) shunt put in to deescalate it. After years of revisions, an even larger brain slump, the development of an 11mm syrinx in my medulla oblongata (syringobulbia) draining down my cervical spine (syringomyelia), I will eventually be needing my shunt replaced with a Ventriculoatrial (VA) shunt and all the revisions that will come with that, especially as an Ehlers-Danlos patient. I also have a tethered cord that has yet to be addressed, but I'm surviving and still trying my best to thrive.
What I LOVE about the Chiari & Syringomyelia Foundation (CSF) is all the amazing videos that they put out. They support research, but they keep awareness as a key factor. There really is so much known about Chiari and its comorbid conditions, the doctors now need to know. The videos that they release year round, enable us to share what the doctors know, and help us make others aware of all we "really" go through. They trust us to support their efforts through walks, which serve an additional purpose of getting us out of the house and actually having face-to-face encounters with other Chiarians. I will forever be grateful to CSF (and Cathy) for all the hard work they put into building a sense of community, in our community. I encourage everyone reading this, whether they have Chiari or love someone who does, get to a Unite@Night walk in your area. If there are none, start one. You'll never regret it, nor will those that join you, as they have that opportunity of community and hope offered through Unite@Night walks!
I have organized a unite@night walk for the past 4 years. I've attended the past two unite@thehill events. I have attended countless educational events and I am so very happy to be associated with them. CSF made a difference in my life!!!
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!!!!
My daughter has chiari. When we first found out this is one of the foundations that I was told to look into. I’m so glad I did.
The CSF organization has been a saving grace for me. As a person with chiari, they have provided support in the areas of education by sponsoring lectures, meet n greet medical professionals, informative info on social media, a supportive community, sponsored local events & even helped with finding the right specialists & doctors. The CSF staff is friendly & have a big heart for helping those struggling for answers. Thank you.
I was a young mother of 3 boys far away from family. My husband and I were walking to our sons first football game when I went down, my legs had NOTHING and stayed that way for 3 days. Went through decompression, twice. I was so alone as nobody had ever heard of it.
I found csf, they have made such a difference. Working together to bring awareness to this monster. Thank you for taking the time to read my story.
Having a child with what seems like a very rare malformation is terrifying! Being misdiagnosed for over a decade because doctors, family and the general population have no idea what to look for, or how to test for it, or even what the symptoms are....is infuriating. But how will people know? How will doctors learn and our knowledge and understanding grow if not for organisations like this one getting the word out! The Chiari and Syringomyelia Foundation have featured so many of the 'experts' in this field, and there aren't many. What they are doing for this disease is fantastic, This information needs to be out there, and it needs to be available to the general public. Patients and mothers and caregivers need to be armed with useful and reliable medical knowledge so that they can help doctors diagnose and treat a disorder that is much, much more common than we understand. This is a problem that can be solved, maybe not prevented? But either way, this knowledge is power and it's so very important to me and hundreds of thousands of others.
As a patient who has Chiari I have been ignored, lied to, and ignored by this organization. The organization doesn't see any issue with spreading incorrect info regarding Chiari.
I was born with a tethered spinal cord and developed syringomyelia from it not being properly diagnosed. Two of my children have Chiari Malformation and we all have hypermobile Ehlers Danlos Syndrome. It took four and a half years for me to get the right diagnosis. After which I felt empowered to finally start treating my illnesses. That was quickly followed by hopelessness and despair as all of my doctors told me they knew nothing about any of it. The CSF has an amazing board of advisors, physicians recognized around the world, listed on their site. I first contacted Dr. Fraser Henderson, who reassured me, I was not an anomaly to him. He has since done three surgeries on my neck. Dr. Petra Klinge, also on the board, has performed Spinal cord surgery on me and is going to now start seeing my children. Without the CSF, the information and resources they provide, I don't know where I'd be. Those doctors saved my life. As I learned more about my illnesses, my desire to raise awareness has become a calling. Now, with the help of the CSF, I hope to bring awareness and education to the doctors in the Hampton Roads area of Virginia. This is only the second year our area has held a unite@night walk, and those of us chairing the walk feel the CSF provides such a tremendous service to people with Chiari and Syringomyelia, that we want to give back to the organization year after year so they can continue to serve their mission.
Four years ago, when my grandson was diagnosed with Chiari Malformation, my first call was to Dorothy Poppe. I cried and told her about my grandson's diagnosis. Dorothy was extremely compassionate and helpful on that day and in the months that followed. She has always answered every question and continues to do so to this day. Her first hand knowledge of chiari both as a mother and a professional has been an important resource to me and my family. We continue to support CSF and all it's programs.
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.
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.
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.
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.
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