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.
April Roberts | Piedmont, Alabama
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My name is April Roberts. I am married to my God sent husband, Tommy. We are blessed with three grown children, Shanda, Sloan, and Sarah along with five grand children, Alissa, Bryson, Cason, Emberlyn and Slaydon. My family and God is my strength to keep on every day.
In June 2009, I was diagnosed with Chiari & Syringomyelia. In November 2009, Dr. Patrick Pritchard performed a brain decompression and duraplasty at UAB hospital in Birmingham, Alabama. I must add, in my opinion Dr. Pritchard is the best neurosurgeon in the world. My syrnix was and still is from C4 to T9. The surgery has kept my srynix from incresing in size. So, in my opinion it was a success. However, as we know surgery is not a cure but a treatment. I still have headaches, numbness and weakness, foggy memory, difficulty concetration, neck and back pain, and other symptoms. By documentation and my chart, the neurosurgens say I should be blind or in a wheelchair. Thankfully, I'm not. There was a time I felt crazy, felt like I was a hyperchondriac, and felt alone. I knew I absolutley could not be the only one that was going through this. This is when I decided to turn my story into an awareness. After speaking to my sister; I researched different foundations and awarenss for Chiari. That is when I found Conquer Chiari! In 2013, my sister, Myra Williams, and I organized the Piedmont, Alabama walk for Conquer Chiari Walk Across America. We were the first location to raise awarenss in Alabama for Conquer Chairi. Our walk was held in 2013,2014,2015, & 2016. Through the awareness, we have met some amazing families that have been affected by Chiari & Syringomyelia. We have had many families to ask us when we were going to have another walk. Therefore, we are back. PIEDMONT ALABAMA is back on the map for Conquer Chiari. If, I can help one person or one family; my mission through Chiari awareness is accomplished. Through my Chiari journey; I want to give thanks to God for my strength and my ability to get up every day. I want to say thank you to my support system which is my family and my friends. To my chiari families; thank you for your stories and please know that I am here for you, always. |
Daphne Renfroe | Tuskegee, Alabama
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I suffered all my life as far as I can remember with real bad headaches. For 51years I could not bend over to tie my shoes or if someone said something real funny, I could not laugh like I wanted to because my head would just throb with pain. I was diagnosed with Chiari in May of 2013 and had my surgery August 2, 2013. Since then I am able to tie my shoes and laugh at anything I want and my head does not hurt. I still have some of the other symptoms that are associated with Chiari. For me to be the only person in my family and in my city that I know of to have Chiari, I get a lonely feeling sometimes. I know I am not alone because I have a wonderful group of family and friends to stand by me and support me. I also have a wonderful support group within the Chiari organization. I really enjoy organizing the walk in Tuskegee, Al. This is my second year as organizer for this area. I want to help raise awareness so that we can Conquer Chiari. |
Bethany Wells | Phoenix, Arizona
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My name is Beth Wells. This is the 5th year our family has been organizing the AZ walk. We attended the first 2 walks, in 2008 and 2009 in AZ. In 2010, we learned there was not going to be a walk. So in 2011, we stepped up to bring the walk back to AZ. Our motivation to organize the walk is our 15yr old chiari hero. He was diagnosed with chiari and syringo when he was 6 and had surgery shortly there after. Thankfully he has been feeling pretty good...but unfortunately his MRI done in Jan 2017 shows a much larger herniation and syrinx as well as more enlarged 4th ventricle. He is scheduled for another decompression surgery in June, 2017. |
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. |
Sunny Gilstrap | Sacramento, California
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My name is Sunny Gilstrap. I am the mother of two beautiful twin girls and wife to an amazing man. When my youngest twin (by one whole minute!) was born, she came into this world fighting. She fought to survive, and she nailed it! About eight months later her Pediatrician was concerned of possible fluid in her brain, so we had to have an MRI done. Luckily, no fluid. However, it was found that my baby has Chiari Malformation. I was told over the phone, a first time mommy with two babies, and the doctor, with 40 years of experience told me to write it down, how to spell it and I needed to research. He had only seen this twice during his tenure, Riley was his second case. I did what any mom would do, I cried for a minute, and then I got to work. We were referred to an amazing neurosurgeon, whom I trust. Which is good, as she may be performing brain surgery on one of the best things I ever did in my life. And we found Conquer Chiari. At our first walk in 2013, we discovered that there are so many out there struggling with Chiari, and unfortunately, most doctors cannot even pronounce it correctly. I am hoping to be a part of changing that. In 2016 I was given the opportunity to organize our local walk, and it was such an amazing experience. I am honored to be a part of this group, and so excited to see what is in store for this organization and our Chiari Community. |
Christina Dunn | Mountain Home, Idaho
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My name is Christina Dunn. I am the military spouse to an amazing EOD tech. We live in Mountain Home, Idaho with our fur babies.
I was diagnosed with Chiari Malformation in December of 2021 and my world was rocked by the diagnosis. I went down the rabbit hole of information on Google and saw all the horror stories. Once I got on the right side of the internet, however, I found Conquer Chiari and was more encouraged and less afraid. I decided to become an organizer to help give others that same sense of comfort and encouragement. My life goal is always to help others feel loved, heard and understood better and Conquer Chiari is helping me meet that goal. |
Meredith Bryant | Indianapolis, Indiana
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I was diagnosed with Chiari in 2014 by my neurologist who was treating me for severe migraines and numbness to my right side of my body. At the time I was 24 years old and had no idea what Chiari Malformation was or how serious it could be. I had my first surgery May 2015 that caused to much spinal fluid to flow and popped my stitches and started to leak, which caused infection. I then had my second surgery June of 2015, but this time I was hospitalized for an extended period of time with a spinal drain in my back. This seemed to help and made recovery a lot smoother than the first. After a year or so I signed up for my first walk and have participated in 4 walks since then. This will be my first year as an organizer and the first Chiari Walk for Indianapolis. I’m very excited to see the turn out and hope to continue this for many years. It’s great to know that there are others out there like me and this organization has done so much to show me the support I have needed. |
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! |
Jessi James | Lincoln, Nebraska
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My name is Jessi James and I was diagnosed with Chiari and Syringomyelia at the age of 17. I have had 2 decompression surgeries since then. This is my 4th year participating in the Walk Across America. For the first two years I was a co-organizer, and this is the second year I am serving as state representative. My motivation in being involved is the lack of awareness there is about this malformation, and how many people suffer because of it. I hope to make someone's life easier and brighter because of what we are doing! |
Amanda Griffith | Charlotte, North Carolina
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My name is Amanda Griffith and this will be my 3rd year doing our walk in Charlotte, NC. My son, Colton, was diagnosed with Chiari Malformation in September 2014, at 2 years old. He was in extreme pain and the only thing he knew to do was lay in the floor and scream, while holding his head. It was a difficult journey for us to be able to find the cause of his pain, and find a doctor that would actually listen to us. After he was diagnosed, we had our first meeting with a neurosurgeon in October, who told us he should be fine, Chiari isn't that bad in children. Colton's symptoms got worse, he was unable to walk without falling, had busted his head open twice due to falls, he was unable to eat without getting choked, his muscles started giving out on him, and more. We had another appointment in November, right after Thanksgiving and the doctor finally saw what we did and he was scheduled for decompression surgery December 11th. 7 days later he had complications and fluid build up and was sent in for emergency surgery. Since these 2 surgeries, Colton has been a happy and wild little boy. He has started to have symptoms reappear but we are confident that we will be able to get things under control. I hold a walk, and fight so hard for Chiari and a cure for him, and for all those who have to suffer. We can't wait to make 2019 a record breaking year, get the word out there about Chiari and help find a cure! |
Amanda Briggs | Mount Gilead, Ohio
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My name is Amanda Briggs. While I do not personally know the struggle with Chiari & it’s abundance of symptoms personally, it is a cause I care deeply about. My father was diagnosed in 2018 after many years of issues that no one seemed to be able to figure out. He underwent decompression surgery in late 2019. While the surgery was a success, he still suffers daily. After his diagnosis, we have gotten in contact with quite a few local families from our small town who have also dealt with Chiari. Our hope is to bring awareness to our community & celebrate those who are on the Chiari journey! |
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 |
Taylor Gustafson | Portland, Oregon
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My name is Taylor Gustafson. I am married to my husband Iver. We met in a brain injury rehabilitation program following brain injuries. I was diagnosed with Chiari Malformation following my brain injury in 2013. After being denied assistance with my Chiari by a surgeon due to it being “incidental” I went up to OHSU and received help. I received decompression surgery two weeks later after finding full CSF blockage. My family and I opted for a non-duraplasty surgery at the time. This surgery did not restore flow. I went in for another decompression 9 months later with duraplasty and C1 laminectomy in 2014. It was shortly after this I was diagnosed with POTS and EDS as well as Syringomyelia. In 2016 I had tethered cord release surgery at Emmanuel Hospital. I only wish I would have done more testing and gotten my diagnoses before the decompressions as that would have changed my path of surgeries. Surgery did not cure me by any means, I still have bad days. However, they are fewer and further between my good days. My symptoms vary, but mostly include vision deficits, balance and headaches. I am legally blind and a part time wheelchair user. Thankfully, I am able to work part time. Two years ago, my husband had an MRI after a motor vehicle accident and it was found he has Chiari Malformation as well. This makes me sad for his wellbeing, but it does create a sense of understanding between us on our bad days though. In 2017 we flew to NYC for me to be seen by Dr. Greenfield to get another opinion on my Chiari as in Oregon my doctors determined I was cured. Dr. Greenfield determined I have sagging and cranio-cervical instability. However, he does not feel comfortable intervening without someone local partnering with him for post-op and no one will as they are too scared to touch me at this point. I decided to take on the role of advocating and running the CCWAA for Oregon because I do not feel it is fair those in Oregon should have to fight as hard as I did to get diagnosed, recognized, and fight for the care that I do. We deserve care too. I want to raise awareness and crease a sense of community locally for others with Chiari. So here’s to those with Chiari and their loved ones, locally in Oregon and afar, we see you and want to help you! |
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My name is Kristy Gergal. This is my first year as an organizer, and the first year for a walk in Lancaster, PA! My motivation for organizing the walk is my 6 year old son Chase. He was diagnosed with Chiari when he was a year and a half, and since that time has underwent 4 decompression surgeries. Like most other people, we had never heard of Chiari and were afraid and searching for any information we could find. Now that we have a handle on understanding the diagnosis and what it means for Chase, we would like to make a difference to others. By sharing our story, we are helping to raise awareness and trying to help others who are as frightened as we were when we found our son needed to have brain surgery. Chase has so much support behind him from our wonderful friends and family, who I know will help make this walk a huge success! |
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Hi, my name is Kristen and I am the lead organizer of the 4th annual Conquer Chiari Lehigh Valley Walk. I was diagnosed with Chiari in 2002 at the age of 22 and have had 6 surgeries to date for my Chiari and Syringomyelia (as a result of being misdiagnosed for years). 8 years ago, my loving but crazy daughter, and loving but crazy sister and I did our first walk; and each year I have gotten more and more involved in organizing a local walk. I co-organized in Philadelphia and Levittown and was thrilled when a walk started closer to me in the Lehigh Valley. Each year my team has also grown more and more (we went from the 3 of us to over 20 last year!) and I am so grateful for the support I have from my friends and family. I look forward to the walk each year as I am always thrilled to get to meet others with Chiari and to feel that in my way I'm fighting back and making a difference for others. Can't wait to see you all there as we walk to Conquer Chiari in 2020!!! |
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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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My name is Sarah E. Johnson (left), pictured with my Co-Organizer, Leah Anderson (right). I am a Clemson University Alumna, Medical University of South Carolina Alumna, and a Chiarian. I was diagnosed with Arnold Chiari I Malformation (CM-I) in 2008, after a series of soccer injuries and concussions, which led to debilitating headaches and piercing neck pains. My diagnosis was confirmed after an MRI scan of the brain; CM-I. In the past few years, I have experienced my symptoms increasing in severity. I have been put on various medications to help treat my symptoms and have now found a good combination that works best for me, as I am not a surgical candidate. Every Chiari case/patient is different! We are here to support one another in our Chiari journeys and that is why I have become involved in this fabulous (and FUN!) event. I am truly honored to represent Conquer Chiari in Clemson, SC for my fifth year as a Site Organizer. Our hopes are to bring together fellow Chiari Warriors and community members in the Upstate of South Carolina, while raising funds and awareness for Chiari Malformation research! Join us and help Conquer Chiari! |
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Hello My name is Tracy Fapetu and I suffer from Arnold Chiari Malformation And Fibromyalgia.This is my second year as the organizer of Nashville,Tn and many more to come.It all started back home in Nashville, Tennessee in 2004, after going back and forth to the doctor about headaches, dizziness, gaining a lot of weight and not knowing why, back pain, and muscle spasms. I often got headaches every other day, all day, and nothing would make them go away. I was always told to take some Tylenol or given pain medication. It was like nobody cared about me. It even led up to me losing my job, but I didn’t give up. I kept on struggling and striving to do my best. I was even told that I had plantar fascia for the numbness and tingling in my hands and feet and was sent to a foot specialist. At the time all of these things were going on, I was a single parent of 3. I kept switching doctors because I always said he/she don’t know what they were doing. That still didn’t take the pain away, but I had to be strong about it and do what I had to at the time. I had to deal with the pain and suffering for 3 years. In 2014, I met the man that changed my life, and my husband and I moved to New York City. It was October of 2015 I decided to go and get checked out by a doctor in Brooklyn, NY and she referred me to a eye doctor, and he then referred me to a neuro specialist, who then ordered an MRI and a lumbar puncture and finally got me some closure for my problems. In August of 2017 I had brain surgery which is not a fix but just prolonged the symptoms.I want to say thanks to my doctors and my husband Folusara Fapetu. Now I’m on a road to getting it under control. My husband has been here with me through this struggle, and I thank him for that. |
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We are Debbie and Breanna Williams from Morgantown, West Virginia. My daughter, Breanna, was diagnosed with Chiari malformation at the age of 16, decompressed at 17. As she became very ill, with almost every Chiari symptom, it hindered her life in many ways. Fortunately, after having the surgery and being 7 years post-op today, she has just a few symptoms today. However, she has severe memory lost and doesn’t remember being sick. Breanna has a son who is almost 4 years old and the joy of our lives! She works from home as a medical coder, taking online classes to further her education, and takes care of her son, Landon, full time. My daughter and I started the Morgantown, WV Walk in 2013. In 2012, as I was having chemo due to being a TNBC survivor, Breanna asked me to attend a Chiari Walk with her if one came close to us and I felt good enough. Luckily, the Charleston walk was close and I was off treatment at the time. She had a great time and met new Chiarians who became some of our dear friends. This has been a blessing in disguise for me to be honored to serve as a representative for the Conquer Chiari Walk Across America. It’s my pleasure to not only give to my daughter, but give to the Chiarians fighting this terrible disease. I look forward to volunteering my time to the Chiari Foundation as I am rewarded with friendship through the years to come. |
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My name is Ashley Kuske. airmen, wife, mother of 2 boys and a bonus boy, and Chiarian. After suffering from debilitating migraines for nearly 10 years and a few years of vertigo and other problematic symptoms; I was diagnosed with Arnold Chiari Malformation in early 2014. Long story short, I was finally able to get my doctor to schedule an MRI. I went home and did some research before my MRI and talked with my family. After talking with my half-sister on my father’s side, I learned that she was experiencing the same exact symptoms and had been diagnosed with Chiari. With that handy information I went in for my MRI telling them “my sister has this, please check me for it”. Sure enough they were able to “see” it, a 9mm+ descent. I met with a neurosurgeon and a few weeks later I underwent decompression surgery with a laminectomy. I have felt great ever since and am almost back to my “normal”. In 2015 I became involved with CCWAA as a site Organizer. I thought it was an amazing event/experience and decided that I wanted to be a part of this wonderful organization. My hope is to bring together fellow Chiarians and community members in the Madison area to increase Chiari Malformation awareness for a brighter and more knowledgeable future not only for us, but also for our children! Join us in Madison and help spread the word! |
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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. |