I was diagnosed with Chiari 1 Malformation at the age of 60. I started having all kinds of weird neurological symptoms, along with horrific occipital headaches. I went to a neurologist who sent me for an MRI of the brain and found that I had a 2-3mm herniation. When he reviewed the results with me, he said that I definitely did NOT have chiari malformation as stated on the report, I was not herniated 5mm. I did not go back to him. I have a new neurologist who also feels that I don’t have Chiari…”everything is in your neck”. I don’t have any other choices where I live for neurologists, so I just go to her for my six month appointments now. But I came across Conquer Chiari and found my home! I have done studies and Chiari Academy and have learned so much. They have been my life saver. Especially the ACT therapy study I was in. I was also lucky enough to find a pain management doctor who has helped me with interventional injections rather than medication because I still do have to work. Conquer Chiari has helped thousands of people and will continue to do so and should be recognized for all THEIR accomplishments and dedication! Thank you for listening.
This is my story!
In March of 2019, I found out I had Chiari Malformation 1 and Syringomeylia. I didn't think of myself as sick or that I have an illness. There’s still somewhat of a disbelief when I looked in the mirror and can’t see anything externally wrong, but I felt parts of my body tingling and my head throbbing like I got hit by a semi-truck. I have taught myself to go about my day as if nothing is wrong, you would never know I was having a massive migraine or that I was battling extreme nausea.
I was diagnosed with this chronic illness out of the blue at the age of 23. I have been experiencing migraines for what has felt like forever, with no relief. I tried over the counter medicine and even prescription from my neurologist, nothing was working. This led my neurologist to order a CT scan, which led to an MRI and words I’d never heard before in my life: Chiari Malformation, Type 1.
I was referred to a neurosurgeon in Morgantown May 2019. He pretty much told me if I could have a child naturally (I had my first son in 2014) then I was fine to live my life. I was very discouraged after that appointment. I just put my diagnosis on the back burner and went on with my life.
I attended my first Walk in 2019 and loved the experience. It was nice to meet people that knew how I felt and hear there stories.
I had my second son in July of 2021. My symptoms continued to get worse. I went back to the neurologist, which at this time was a new Dr. (Mine retired) She tried multiple medications and injections to see if they would help. Nothing worked, so she finally referred me to a different neurosurgeon.
When I went to my first visit, he told me right away that I should have had Decompression Surgery when I found out I had Chiari and a Syrinx in 2019. That news shocked me...after the shock sunk in, we went on to schedule my surgery. I had Decompression surgery December 9th 2021. My recovery was rough but I had a wonderful support system that I thank God for everyday. I attended physical and occupational therapy after surgery. To this day I still experience migraines and nausea. Not as often as before surgery but they seem to be worse when it does happen. I still get tingling, especially in my left shoulder and my hands shake. But I will continue to fight this battle and raise awareness for Chiari Malformation. I don't know where I would be today with out this Foundation and all the information it provides.
C&S is something that you never knew you needed until you get those dreaded words/diagnosis from the Drs. My son was diagnosed with Chiari 1 Malformation a little over 4 years ago. We quickly learned about this non profit organization and it has been nothing short of amazing. They have answered any questions and have made my family feel at ease during the most difficult times of our life. I am confident that C&S will eventually be able to find a cure for all of our Chiarians and I can not look forward to that day enough! Thank you C & S for everything that you do and continue to do, it is an honor to be apart of this Chiari community considering the circumstances
My name is Donna and I had joined the organization after taking over for my sister Amanda last year. Last year was my first year doing anything like this by myself. Although our walk itself was not as successful as it was the previous year we did manage to almost reach out monetary goal 2,500 three times and I can’t thank everyone who sponsored us and gave what the could the help out last year it was truly incredible. My dad Michael was diagnosed in 2018 with Chiari Malformation and had surgery that august. We all went to the hospital and waited and hung out with our mom the whole day and be there for the most intense surgery he had had at that time. We are so thankful for the surgeons and nurse staff who were there to help him and us through this time. He is one of the most important people in my life as well as he is for others. We will continue to show the world the support we have for him and all Chiari warriors. Not all are the same but all are loved just the same. We will continue this journey every year with hopes of a cure one day. #CONQUERCHIARI #PURPLEPRIDE #VANDYKESTRONG
I had the symptoms all my life, but wasn't diagnosed until I was 52 years old. I had never heard the word Chiari in my life, until the doctor informed me and mispronounced it. I learned that not many doctors are educated or qualified to treat me, or other Chiarians, and they still are not teaching it in many medical schools. I fought for disability for 6 years, and by the time I finally had decompression surgery in 2018, I was literally on death's door. While surgery saved my life, and made some great improvements, I am not cured. I still struggle with several Chiari symptoms and those of the related disorders. I am so eternally grateful to Conquer Chiari for helping me cope, get educated, navigate this journey, and advocate for myself. I am dedicated to spreading awareness of Chiari Malformation! Conquer Chiari truly is a GREAT NONPROFIT!
Conquer Chiari puts Patients and Chiarians First! They have furthered knowledge and spread the word about Chiari helping all those who are touched by Chiari.
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My mom began reading the conquer chiari book in 2013 religiously when she was first diagnosed. After I was diagnosed her researching got more intense. She always went to conquer chiari for every answer she could. When I got old enough to understand I began going to conquer chiari to help learn more. I've been helping my mom host conquer chiari walks for I think 8 years now. It's helped me so much having kids my age who understand! I wouldn't have that without conquer chiari!
Conquer chiari has and continues to help us with our journey with chiari malformation! This foundation has been just a wealth of resources for our family. It has not only helped us but the chiari friends we have made along the way.
Our twin babies were born in 2012. We were lucky to have a great pediatrician who discovered our littlest has chiari malformation. When we were given the diagnosis, I was told how to spell it and that we would see a specialist. The doctor told us he had seen 2 cases in his 40 year career. We found Conquer Chiari the following year, and have attended, now coordinate, our local walk every year. CC gave us hope, showed a brand new mama that her baby could be ok, and helped us find an amazing support system. We have met so many with chiari, even our next door neighbor (it’s more prevalent than you think), and are giving back to be part of the support for this community. I cannot express how much this organization means to us, and so many others. The donations helped fund research, education and awareness of chiari. It is being diagnosed more now with MRIs being more prevalent, which means our community is growing. But there is still no cure. Even brain surgery, like the one our daughter had when she was 4, does not cure this or mean your symptoms will cease. Please support Conquer Chiari and help the fight to find a cure!
My Chiari Malformation was diagnosed in 2016 after I talked to a chiarian and they led me to the Conquer Chiari website, which then made me ask my physician for some testing to be done. Without Conquer Chiari (C&S Patient Education Foundation), I would've never known to ask further questions and what to exactly ask about.
I have been organizing my local event for going on 6 years now because I know how hard Conquer Chiari is working on finding out what is causing Chiari Malformation to occur.
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I was officially diagnosed with Chiari at the end of 2016. At first, I didn't know much about Chiari. Luckily, I have a friend that had me go to Conquer Chiari's website, where I learned a lot about my diagnosis. I then went to a local Conquer Chiari walk in 2017 and realized that I was definitely not alone. I attended their open house in Akron, Ohio and was pleased with everything that I saw. It made me very happy to see that they are working hard to one day put a stop to Chiari Malformation and to get answers on why it happens. Thank you so much Conquer Chiari!
Conquer Chiari has always been here for me. When I was first diagnosed in 2011, their site was the most detailed and I was also impressed the first addition of A Patient's Guide was available for purchase to help me navigate and better understand my condition. They truly care about educating patients, raising awareness, and improving outlooks and outcomes.
Conquer Chiari has been such an amazing help since our son was diagnosed. They have updated their website and make things so easy to find. We attend a walk every year and have met some really amazing people. Thank you so much for making a difference for all of us.
I absolutely have such a huge place in my heart for Conquer Chiari. They have given me a community and such confidence with my diagnosis.
After being diagnosed with Chiari in November 2019, I had decompression surgery in September 2020. It was shortly after that that I found the annual Conquer Chiari Walk Across America and from there, I have made so many wonderful connections with fellow Chiarians and their family members. Conquer Chiari has been an amazing resource for myself and my family! Not only have I made friends who've been through a similar situation, I've also learned more through Conquer Chiari and all of the information they share than my own doctors have been able to provide. Extremely thorough and correct information is shared across many different platforms and it's easy to find. Additionally, I've always gotten a thorough reply (and quickly at that!) each time I've reached out to Conquer Chiari. Overall, I cannot speak highly enough of this incredible organization! The fact that they spend so much time raising Chiari awareness and putting all of their proceeds directly to research, in my opinion, makes them one of the best!!
Eight years ago, I was diagnosed with Chiari. I had two brain surgeries after a year of searching for a diagnosis and treatment. The first couple of years I spent searching for answers and those with similar stories and then I found the SC Chiair walk in my hometown. I loved having a way to connect and meet others who were so similar to myself and to have a time with them that we could spend while raising money to help others. This foundation allows for support and continued research and is something I am very thankful for.
My son was diagnosed with Chiari in 2014 at 2 years old, and 3 months later had 2 back to back brain surgeries. During this time we felt lost and alone. Most doctors and medical staff we talked to had never heard of Chiari Malformation so we were constantly having to explain it. After doing tons of my own research we found Conquer Chiari, attended our first walk in September 2015 and for the first time we felt like we found somewhere to belong. We shared our journey, found support, and life long friendships. We have been hosting our walk for the last 6 years and the community that has been built is like no other and people are starting to know the word Chiari! We continue to walk and fight to help raise awareness and funds for research to find a cure!
I was first diagnosed with chiari about 15 years ago. I have had a total of 8 brain surgeries plus a spinal detethering related to this condition. My daughter, son and several grandbabies also have chiari and related conditions. We found our first walk 5 years ago and it was over 2 hours away. We took over the next year and love watching people realize that there are others like them. This nonprofit offers a great way for us to reach out to others throughout the country, as well as fund research and education to help continue finding more answers.
I was diagnosed with Chiari in 2010 I was lost and didn't have a clue what it was. I did some research and had surgery I had surgery 05/11. I attended my 1st walk 2016 in Cordele Ga again 2017, but I hosted my own in 2018 in Ashburn Ga and will be doing it again this year. I think it's a great way to get awareness out and to raise money for research for a cure! Thanks for everything!
This foundation has been the voice for thousands of others out there battling this terrible disease. They are organized, responsive, hard workers and have a passion for what they do. And We love donating and doing fundraisers and walks for them because we know exactly where our money is going. Thank you C&S for giving us hope. We are so thankful!
I was diagnosed with Chiari Malformation in 2012. I did not know what it was and did research. They Conquer Chiari has helped me a lot to understand what I have got. I host a walk every year in Knoxville, TN. I have people ask me a lot of times what this is. I love to tell people my story, cause it show you there is a God and always keep your faith and strength.
My mom, brother and myself were diagnosed with Chiari a bit over 10 years ago. It wasn’t until 5 years ago that we heard of Conquer Chiari. We heard of a Chiari walk about 50m away from us and decided to shove our anxiety away and go. It was the FIRST time we’ve ever felt understood and ever fit in anywhere! They do amazing awareness and have great community involvement. We now volunteer at our own walk and almost every single person that shows up is so grateful to have an organization that sheds light on what we go through. It’s really amazing.
This will be our 2nd year having a team and fundraising. I have three family members with Chiari. It feels good to donate and help raise awareness!
This will be our 5th year! Before we started our walk I had never met anyone with Chiari, I can not even explain the feelings that came over me!
Conquer Chiari has helped me to cope with my disorder and allowed me to become involved with awareness and advocacy relating to Chiair Malformation. It has provided me the platform to learn about current research and even participate in it. It is an extremely organized group full of wonderful people. It has been a pleasure to attend the Conquer Chiari Walk Across America 5Ks near me for the past six years, and I look forward to continuing to be involved in this group.
When my grandson was diagnosed with Chiari we had no idea what to expect. It took time but we finally found Conquer Chiari's website and it was such a huge help! We were so happy to finally have answers and find an organization that was doing much needed research on Chiari Malformation. Thank you so much for everything you are doing! We greatly appreciate it!
Conquer Chiari is an incredible non-profit organization! They have been SO helpful since my diagnosis. They were there when I felt so alone with no answers. Now I'm the organaizer for the CCWAA Centralia for the second year!
When my son was diagnosed with Chiari at 11 months old I had no where to turn. Finally a few months later I heard about Conquer Chiari and they were a HUGE help. I finally had information and met people through the Conquer Chiari Walk Across America. I am so thankful for this amazing organization. I have been volunteering with them since 2012 and I always well be! Thank you Conquer Chiari!
My daughter was diagnosed with Chiari at age 4. Conquer Chiari was a godsend! It was the best source of information and support at a time when both were needed and hard to find. I am honored to volunteer for their annual fundraiser in order to help other families who are in the situation I was in. Conquer Chiari was, and is, a tremendous resource and I am very grateful for them.
I was diagnosed with Chiari Malformation in August 19th, 2015. 45 Days before my wedding. We felt like we were afloat in the middle of the Ocean and there was nobody there to help. I was on the internet looking nonstop for any information that made sense and came from anywhere reputable and didn't seem like it wasn't just nonsense. Then I found ConquerChiari.com and from there I found the online support groups of people that were also part of the Conquer Chiari community. All of a sudden I felt like someone had thrown me a life raft and we were finally getting some direction, and we weren't so alone! Having people to talk to that knew what the heck we were talking about made all the difference in the world. Just having someone to talk to that understood what I meant when I said I felt foggy, made all the difference in the world. This is truly a wonderful organization, and after finding them, I HAD to get involved. Especially finding out that there were SO many people in my area that have Chiari, but so few people that actually knew anything about it. This will be my third year planning the walk here in my area through Conquer Chiari, and I wouldn't have it any other way. Because of them, I've been able to spread so much awareness, and I am so extremely proud to say I am associated with them. They are always available to answer questions, and help with anything they can. I love that they are very transparent with their financials and everything is posted right on their website. You can't find a better organization to be a part of.
I was diagnosed with Chiari Malformation when I was 18. No one I knew anything about the condition. Conquer Chiari helped us to understand the condition so much more than even my doctor's did. Now I am the organizer for the CCWAA walk in Centralia, IL!
I live in small town where the doctors aren’t educated in Chiari Malformation. The members of the community suffered in silence feeling alone. Thanks to Conquer Chiari I’ve been hosting chiari walks and spreading awareness in my small area. The amount of people who have come to me and said I haven’t met anyone who has this and understands. If it weren’t for Conquer Chiari these people would still feel alone in this journey.
This organization has created an amazing community for the Chiari world. It does very important research that helps young and old. Amazing people with big hearts!!
I was diagnosed in 2003. What I knew about Chiari was basically what the doctors were telling me. I felt very alone, overwhelmed and scared. Cut to 7 years later when I found this organization and attended a fundraising walk. This organization has connected me with others who suffer from this chronic illness and many resources to improve my well being. The fellowship I have found has been immeasurable. And forever thankful!
I can’t thank this organization enough they have got me through the roughest toughest times of my life I’m sure I’ve been on there nerves. But I can say this they have never turned me down or away always accepted me with open arms.
I live in a very small town yet four of us have the same rare disease and there are no doctors in the area who can help. I found the conquer Chiari organization online and it answered so many of our questions. After joining several of the groups led by the organization I was able to find doctors for me and my friends as well as help educate and now I get to help host the awareness walks to further the understanding of Chiari malformation!
I absolutely had no clue what Chiari was when I met my new daugher in-law and grandson for the first time. My grandson Charter has Chiari and we wanted to know all we could about this disease. I jumped right in to learn about it and volunteer at the yearly Golf Tournament and Walk for Chiari. When I was doing research about Chiari the C&S site was incredibly helpful. I am so greatful for the great work that C&S does to help my grandson and all people with Chiari by educating them, the doctors and the continued support of poeple with this disease. Keep up the great work!!!
Amazing organization!! I am going into my 4th year of organizing a walk through them, and they are a huge support to us, and all of those dealing with Chiari. They have accurate resources to those in need.
Absolutely best organization out there for anyone that has Chiari Malformation! The amount of information available is just endless and so is their support. Each year they along with many volunteers like myself work hard to bring families, friends and individuals together for the annual Conquer Chiari Walk Across America that takes place in cities all over the United States. Funds raised by these events goes towards medical research and awareness. Special thank you to Heather (Heatheroo) Nebel to always being there to answer all our questions and providing information.
My son has Chiari and we cant thank C&S enough. we would not have the knowledge to tackle this in our own without the valuable research being done by this organization. Because of the work they are doing new discoveries are being made everyday that will allow our family and many others like us to understand what chiari is and how to bring awareness.
Terrific organization, my God Son Branden was diagnosed with Chiari Malformation 2 years ago. He has since been decompressed and additional medical treatment.C&S have supported us on this journey. Side benefit being able to support educate folks through their annual Walk has begin a great place to interact with people with the same challenges. A Big