Meet the Organizers
The success of CCWAA is in large part to the people who decide to take on the task of planning a walk. Because of them, others with Chiari and related disorders are brought together, some for the first time. We asked our organizers for a "short" story, explaining why they are involved with the walk. Get to know your local site organizer.
Londa Wells & Andria Netherton | Springdale, Arkansas
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When I, Andria (right) was diagnosed with chiari malformation in Nov 2010, we never heard of it so we searched around to learn all we could. We learned very quickly that it wasn't as rare as we once thought. There were many people in the same position as me. With very few people having heard of it, plus knowing there wasn't a cure, we decided to team up with Conquer Chiari and start a walk for Northwest Arkansas in hopes of raising local chiari awareness and funds for research. We started the walk in Springdale in 2012 after traveling to Little Rock to walk in 2011. Little did we know that mom, Londa (left) would be diagnosed with chiari in Nov 2013. |
Kent Wilson | Murray, Kentucky
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To understand why I decided to organize a local walk this year we have to understand my battle with Chiari. My symptoms started showing up 23 years ago as unbearable headaches and other symptoms mainly syncope that my physician couldn't figure out a reason way but for the most part I managed to maintain a "normal" active lifestyle working full time around 50 hours a week and keeping up with my 3 kids ages 13/12/9 even coaching some baseball, football, and soccer but all that changed June of 2018 when I had a major episode at work and had to have an ambulance called. All my test come normal as usual and as I laid on the hospital bed in and out of conscious sweat dripping down my face for no reason, the ER doctor looked and said we have to figure something out for you and ordered a CT scan and when he looked at the images he told me I needed to be admitted but they didn’t have a neurologist or neurosurgeon on staff but he made a call and I had to be at Baptist Health at 8 AM to see a neurosurgeon. So the next morning I go and see the "best" neurosurgeon in the area and am told I have Chiari 1.5 and am 12 mm... That's really all I can remember because they was a lot of medical mumble jumble. At this point he says we are going to try and avoid surgery because of the award to risk factor. My symptoms just got worst from there to the point I spent 10 days in the hospital under the care of both neuro and cardio but still blacked out 18 days and coded twice. But the physicians were more worried about blame each other's field of expertise (cardio said it was neuro and neuro said no its cardio) to actually figure out what was going on or put things together and have an eureka moment and say thus is related to your Chiari. It's at this point they decided I was no longer able to work after thirty years or drive and needed a walker to get around. It was also at this time I decided to become an advocate for myself and the other because too many of us continue to hear "Chiari don't cause that" or "It's all in your head" etc. This was the point I decided I would get involved with a Conquer Chiari Walk Across America. But I didn't realize the challenge I sign up for especially with my decompression surgery happen on June 21, 2019 right in the height of planning the event. I had some people try to talk me out of doing this year and just focus on recovering and aim for next year but this was my focus while I was struggling and I had faith with my wife/co-organizer (Stephanie) and my other co-organizer Brittney we could get it done. It's been a uphill battle especially with the unknown factor of Chiari making it a challenge to find a location, sponsors, etc and the fact that my symptoms continue to get worst to the point that I am now having seizures to go along with everything else. But I have enjoyed my journey as a first year coordinator and am counting down the days till the event and am already looking forward to CCWA2020! |
Mary Cremer | Jefferson City, Missouri
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My name is Mary Cremer. My 14 yr old figured out I had Chiari after over a dozen doctors missed it and my MRI read "normal". Since her discovery, I have had 3 brain surgeries, tethered cord release surgery and cervical fusion. I also had a small syrinx. I have Ehlers Danlos Syndrome, CSF Leaks, MTHFR and other co conditions. I believe knowledge is power and bring about awareness about Chiari by openly speaking about it. I am also a Chronic Pain Patient Advocate and believe we all need to come together to keep government out of our healthcare decisions. Feel free to ask me any questions because I am glad to help anyone navigate this system. Chiarians are strong! |
Don Bowman | Wauseon, Ohio
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Hello! My name is Don Bowman. My story is a little on the wild side. I was having some hip pain in 2013 that wasn't being solved by physical therapy so I was sent to a neurologist. He did his normal neurological questioning and must've noticed something with me because he wanted to do an MRI of my lumbar spine and brain. All he told me from the results of the brain MRI is that "part of your cerebellum is lower than it should be but it's nothing to be worried about" Now, I've had headaches, problems remembering words, loss of feeling in extremities, etc.. Fast forward to 2016. I was on Facebook chatting with a friend about what her medical condition was because she was posting quite a bit about it. She led me to www.conquerchiari.org. I looked at the site and at that time, there were three figures standing next to each other. Figure one had such and such symptoms. No, that's not me. Figure two was asymptomatic. No, that's not me either. Figutr three had these other symptoms. Huh.. sounds like me! So, I then remembered "part of your brain is lower than it should be", I googled that and BAM! Chiari Malformation showed up. I made an appointment with my PCP. I asked her if she could get my brain MRI results from 2013. She said yes. I get a call as I'm walking out of the building. "Hey, come back in. We want to discuss what it shows on the MRI results from 2013" I go back in and the MA hands me the paper. The results at the bottom of the page "Chiari Malformation I" I had to go outside. I started crying at that point. I knew then that my symptoms weren't caused by something that could be fixed by a pill, exercise, or better eating. The first neurosurgeon that I went to suggested a bone only decompression. I wasn't completely sold on it so I went and talked to the Dr at my PCP's office. One of his friends was the head of neurosurgery at the University of Michigan. He contacted him to find out who I should see. I then went to an appointment with Dr Patil at U of M. He suggested that with the mm of herniation, that I should have a laminectomy of C1, craniectomy, resection and cauterization of the cerebellar tonsils, then a duraplasty. I felt very comfortable with this as he was very personable and explained everything to me as to why he thought this. So, on October 24th, 2017, I had Chiari Decompression. One thing I'll never forget is waking up in ICU saying help me because they had to take me off pain meds because I wouldn't come out of anesthesia. That is a pain I'll never forget. There's more to my story but I'm trying to keep it somewhat shorter so I don't take up too much space lol You've just read the short story of why I organize the walk in Wauseon, Ohio. It breaks my heart to see people having to go through what I did. Especially kids. We should all participate as much as we can in order to raise awareness and the funds to hopefully one day find a cure for Chiari! Hope you have a great day, Don Bowman |
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Hey! My name is Jamie and I am the host of the Charleston SC Conquer Chiari Walk this year! I was diagnosed with ACM1 in 2007 and had 3 surgeries from May 07- July 07. I am a mother of an 8 year old and a soon to be wife! I look forward to raising as much awareness for ACM and helping any of my chiari sisters and bothers along their journeys! |
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This is Nadine Yancey Grinnell & I’m BAAaaacccKKKK!!!!!
I’m a Virginia Native (where I was diagnosed), lived in Central New York state for 6 ½ years (led the Walk up there – different last name - in Rome, NY) and moved back home in 2019.
My (now) husband & I had talked about organizing one here soon after, but too many challenges had come about & seemed to “snowball”. When we heard another local Chiarian was leading one here, we attended & when she said last year that she wasn’t going to lead anymore, we felt it was time to step up. And we’re Excited to be able to serve in this way, reaching out to our community, connecting with fellow Chiarians & loved ones, as well as furthering educational opportunities. There’s no specific time/date of when my ACM1 ‘started’ – perhaps I was born with it. I had headaches/migraines mostly & as I got older, additional symptoms we never knew what or where they came from. The 1st time I even heard of Chiari was when I was getting a nerve test for Carpel Tunnel & that Dr/Tech asked if I knew I had it. I asked “what is that?” & he said talk to your Dr – which I did at the follow-up. He flipped thru my chart, acknowledged it, but didn’t say what it was or how to spell it & then gave me a prescription for a muscle relaxant. To which point I ‘fired’ him & didn’t see another Neurologist for a handful of years later when I was having various symptoms & difficulty commuting to/from work (90-mins one-way). A friend of mine referred me to her’s & that’s when my “official” diagnosis came – Dec 2010 - & he ended up placing me on medical leave in Jan 2011. Not only did he walk me thru what he knew, but he LEARNED with me & told me to do research. That same year, I learned of a CCWAA Walk here in Fredericksburg (led by others) & attended that year and the next before moving to CNY. (Note: before moving, I had also learned I have Ehlers-Danlos, however, that seemed to take a ‘back-burner’ & doctors haven’t really addressed it.) After that point & before moving back home, I’ve seen 4 (or 5) different Neurologists & 4 different NeuroSurgeons in 2 different states. But was deemed “non-surgical” & only 1 NS explained why – my CF blockage is not enough to warrant a brain surgery like this… & I’m perfectly fine with that! SINCE I’ve been home, I’ve seen a few Neurologists – including my former one, Dr. P! Unfortunately, he retired, and I ended up seeing 1 that pretty much dismissed me, treating me like I didn’t know what I was talking about, etc. (Fired!) Other health ‘concerns’ have more recently had me seeing a few doctors & getting some tests. Some (staff) had heard of Chiari, a few had more direct ‘experiences’ (via friends/family). But 1 that stood out is my Cardiologist – she had ‘basic’ knowledge of it BUT ‘lit up’ when I mentioned about my EDS as well. We’ve invited all of them to the Walk. Whether we’re organizing a Walk or just out & about, Chiari will come up in conversation at times. We always do our best to stress the importance of what it is, what’s being done, what can be done, along with emphasizing we’re not alone in this! One thing that has & keeps us going is our Faith! Whatever challenges we have & will face (and we’ve had A LOT!), we have our Strength & Trust in God, our Creator; our Lord, Jesus Christ, to be with us Every. Step. Of. The. Way! With Him ALL things are possible – getting thru it, overcoming it, facing those pesky giants… And the support of others going thru similar challenges helps tremendously! We got this! We are Warriors! |
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1997 changed my world. I was a carefree freshman reveling in all the traditions and fun at the University of Wisconsin-Madison, until I became very ill and required a neck lymph node biopsy. After the surgery, I immediately indicated something was wrong with the back of my head and neck. All the surgeons and doctors thought it was due to surgical positioning. The months and years that followed saw a drastic increase in unexplained neurological symptoms and pain. I began losing functionality and strength in my extremities and even suffered drop attacks on the way to cheer on the Badgers at Camp Randall. Many specialists later, one intuitive doctor says "I think you may have a condition that I have heard of but never seen". Determined for answers, he sent my films and medical record out for review, they came back confirming, Arnold Chiari 1 Malformation. I was decompressed at the University Of Wisconsin-Madison Hospital in the Fall of 1999. Since then, I have been diagnosed with Craniocervical Instability, Klippel-Feil syndrome and Autonomic Dysfunction. I have visited doctors all over the country to decide the safest route to stabilize my conditions. Deciding to wait on the fusion and revision surgery has been a long hard journey. I know far to well that awareness brings action. So I must bring this walk to Wisconsin because Chiari needs action and advocacy. As my family and friends support me, I want to help support our Chiari community in Wisconsin. My name is Angela Zuniga-Meyer, I am a survivor and I want to help Conquer Chiari. |