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. Click on the organizer's pictures to view their flyers.



Daphne Renfroe | Tuskegee, Alabama

d.renfroe.tuskegee.alI 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

b.wells.phoenix.azMy 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

l.wells.springdale.arWhen 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

Sunny GilstrapMy 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.


Serenity Harper | Tampa, Florida

s.harper.tampa bay.flI have had the great honor of working with Conquer Chiari in Tampa Bay to organize the annual walks since 2011. The walk is a passion for me and has become a part of my life that I could not imagine living without. I was diagnosed with Chiari in 2002 after struggling with health issues my entire life. I spent 7 years going to countless Doctors and specialists. I was subjected to painful test after painful test. It took me until 2009 to find a specialist that could understand and help me. I had Decompression surgery in October 2009 and emergency surgery in November of 2009 to repair a CSF leak. It is only by god’s grace that I survived those surgeries. There is not a complication that could be had, that I did not have. During recovery, in February of 2010, my oldest daughter, Gabrielle was officially diagnosed with Chiari. On that heartbreaking day, awareness became not only a passion for me but a necessity for my daughter. Unfortunately in January 2014 my youngest son Riley was also diagnosed with Chiari and Syringomyelia. No parent should have to watch their children suffer with these conditions or any chronic illness.


With the new challenges my family is facing I have also found a renewed faith and committment to my drive to raise awareness and change in the medical community for all Chiarians. No patient should have to suffer through what Chiari patients are suffering through. Doing the walks has changed my life in unspeakable ways. The connections made, the funds raised for research, and the stand we all are making as one for change.


Blanca Diaz | West Palm Beach, Florida

s.harper.tampa bay.flMy name is Blanca Diaz. I am a mother of 3 amazing little monsters and a wife to the most amazing supportive husband. I have been suffering from migraines since Elementary school. After multiple visits to doctors by my mother and no answers from them other than it was all in my head (no kidding). My husband finally said enough was enough and together we finally found a doctor that would get answers.

In 2009 I finally knew what was wrong and it was the first time I had ever heard of Chiari Malformation. The doctor said it was nothing to worry about and sent me on my way. But it wasn't enough for me, since then I have found a great team of doctors who have helped me tremendously. It was one of my doctors who first told me about Conquer Chiari and where I first saw the amazing work people all over the United States do each year to make this possible. I started organizing the West Palm Beach, FL walk in 2016. I can not express how overjoyed I am to be a part of this and bring awareness to my area and look forward to meeting new people.

Join us in West Palm Beach, FL!


Amanda Heath | Augusta, Georgia

Amanda Heath photoHi my name is Amanda Heath. This is my 1st year organizing a Conquer Chiari Walk in my area. My plan is to hold one every year from now on. I have never heard of Chiari till February 1, 2012 when I was diagnosed at the age of 32 with Chiari Malformation and Syringomyelia. I had brain surgery 20 days later. I suffered from headaches and passing out for over 20 years before I was diagnosed. I thought I was all alone suffering till another Chiarian found me through Google. I am learning this disease is not as rare as I thought. I suffer every day and hate that people and doctors do not know about this condition. I have a passion for getting awareness out and hopefully one day we will be nationally known just like cancers are. Together we can all make a difference working together to get awareness out.


Pamela Olander | Galesburg, Illinois

P.OrlanderHi all, my name is Pamela Olander and I live in Galesburg, IL. My story begins so long ago. At the age of 5 I was hit by a drunk driver while on my bicycle in my small hometown of Galva, IL. After a long stay in the hospital it was ab even longer recovery from multiple skull fractures. After a year I finally recovered and was able to return to my passion of gymnastics. On my road to becoming an ellite gymnast, I often suffered severe headaches, some issues with tingling in my hands and feet and quite often would catch myself choking on anything including air. Many trips to doctors and specialists only for them to say that it is libgering effects from my previous head trama.
Add on six years of hard core cheerleading, the kind you often see on tv, and the many activities an athlete takes on in high school, and my symptoms only multiplied. Honnestly I just started brushing them off as much as I could. Graduated High School and left the US for a year abroad as an exchange student to Brazil. What an amazing year. I handled my headaches in stride and made it through. Back home and colledge and the love of my life. We were married, he was a US Marine, retired now, and we have 3 amazing boys. It really hit that something was really wrong while at my oldest sons football games when I fell and lost all feeling and movement in both legs for 3 days. Shortly after that, I was approached by the nuero radiologist who read my MRI...this was the first time I heard Arnold Chiari Malformation.
I underwent the decompression surgery 9 days later at UCLA NUEROSCIENCE HOSPITAL in Santa Monica on Oct. 15, 1999. Since then I have had yet another surgery, countless perscription medications and often, more questions.
Three years ago I was introduced to and decided to get involved with CCWAA. I am honored to be a part of this non profit organization and the family of fellow chiarians I have found through it. Thank you all for your support.


Nicky Boden | Quincy, Illinois

n.boden.austin.txMy name is Nicky Boden, I am 36 yrs old and I was diagnosed with Chiari Malformation on August 19th, 2015, a month and a half before my wedding. Thankfully I have a very supportive spouse that has been with me every step of the way since. I have other spinal issues related to the Chiari and have suffered daily from severe and sometimes debilitating headaches, piercing neck pain and stiffness, drop attacks, fatigue, all over pain and many other serious neurological symptoms for as long as I can remember.

I have been put on a variety of medications to manage the symptoms, though they have greatly increased in severity in the last year and a half. I have undergone multiple tests, MRI’s; have had a loop recorder implanted, etc. I am currently trying to find a surgeon that is both knowledgeable of Chiari and Chiari-related diseases and syndromes; and that we are comfortable in having them perform the decompression.

When I was diagnosed, we had never heard of Chiari, and neither had anyone our families; however after my diagnosis I have found that I actually know people with Chiari, and there are a handful of Chiari Warriors in my area. I want to organize the local walk to raise awareness for this disease that affects so many, and yet so few know about. I believe that it’s important to connect the newly diagnosed with experienced Chiarians so that we are able to lean on, help, and learn from one another.

I am very honored to represent Conquer Chiari here in Quincy, IL, and hope to bring the Chiari fighters together with our local community all while raising money for Chiari Malformation research and awareness. #ChiariStrong


Don Tryon | Auburn, Massachusetts

D.tryon.auburn.maMy name is Don Tryon and this is my first year co-organizing the Massachusetts walk with Diana Casavecchia, which will once again be held in Auburn, MA. I was diagnosed late January 2008 and have undergone two Chiari related surgeries; decompression at Baystate Medical Center in Springfield, MA in March of 2008 and a revision surgery at Tufts Medical Center in Boston, MA in November of 2012. I have been active in the Chiari community since my diagnosis, founding the “Chiari Network” (online support group) and spearheading “Team Western Mass” at the Massachusetts walk site annually since 2012. My strong support foundation includes my wife Jen, children Emily & Matthew, mother Debra & late father Don Jr., in-laws Mark & Kate, Grandparents, siblings, countless extended family & friends, and of course my fellow Chiari Warriors who have been there every step of the way.
I am amazed at how far we have come as a community and medical society since my diagnosis but we all know there is still a long way to go. Our story is just beginning and it’s thanks to organizations like Conquer Chiari that it’s finally being heard!


Lori Mabee | Shelby Township, Michigan

l.mabee.shelby.township.michiganMy name is Lori Mabee and here is some of my family enjoying the 2013 Conquer Chiari Walk! My sister, Chris, isn't here with us because her Chiari headache was too much to bear that day to make the drive from Sault Ste. Marie to attend the walk that year! That seems to be the case for most of the walks I have organized or co-organized for the last four years. So, that is why I got involved.

Chris was diagnosed 13 years ago and, unfortunately, hasn't had much improvement. Our family has attended the walk for seven years and wanted this great walk location and cause to continue long after the existing organizer moved on. We're excited for another successful walk so that we can continue to increase awareness, research and funding to Conquer Chiari!


Natividad Seefeld | Minneapolis, Minnesota

n.seefeld.minneapolis.mnMy name is Natividad Seefeld and this is my 6th year as the Conquer Chiari walk organizer for the great State of Minnesota. My sister Christine Smith became a Chiari Warrior in 2007. She later found out about the walk and became the organizer for Las Vegas, Nevada and from there the story grows as she contacted me to do a walk for Minnesota. I couldn’t say no. I had no idea how big this would grow to be for both of us and how much it would mean to so many including my sister and I. I do this for her and because of her!! She suffers with so much pain and so much more. I wish I could trade places with her as I am the oldest that way she could live a painless life with her children and grandkids for a very long time. I am the oldest and have lived life so I would trade right now if I could. She means the world to me.
With help from Heather Nebel, her family and friends we became the great walk site for the State of Minnesota and more. Each year we grew and learned of others from all over finding out they have Chiari and finding us to be able to connect. My heart goes out to all who attend our walks and it is also filled with great joy each and every year to see all the connections we have been able to create. All thou I do not have Chiari I have do have a little background in what it may be like to have headaches daily, days when you are just so tired you want to stay in bed and the big one brain surgery as I have had 3 of them. I am living with brain cancer and doing as well as I can all things considering but it is not going to stop me from making walk day special.
In 2016 we welcomed a new Co-Organizer Emilie Anderson and her family who helped to make walk day very special as Chiari is a daily part of her family with her son who has Chiari. Emilie stepped up to be the Co-Organizer once again for 2017 and we can’t wait to see what she brings this year.
I am so thankful for every day I am here and every year I can host the great Minnesota Conquer Chiari Walk. I have learned that no matter what life brings you there will always be someone out there that will need more than you. It gives me the drive to make each day better for everyone I can with what I can.


Jessi James | Lincoln, Nebraska

j.james.lincoln.neMy 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!



Maritza Hernandez | Northern, New Jersey

m.hernandez.northern.njMy name is Maritza Hernandez. I am 38 years old and a Chiari Warrior. I have been walking at the CCWAA for 6 years, this is my 3rd year as an organizer.  We reach out to so many people and every year the walk gets bigger & better. I was diagnosed in 2004 with Chiari type I. I had decompression in 2010 and have had 7 additional surgeries since then. I'm no longer able to work. I can not participate in simple activities, BUT I can try to make a difference. That is why I decided to organize the walk- I want to help- I want the Chiari community to know there is a place for us, where we can come together and embrace each other and feel normal. The walk helps us do that!  For 1 day, we can be "normal" regardless of the pain. I have met so many beautiful people, who are now family and that is the BEST part of organizing the walk and being part of the fight to CONQUER CHIARI!




Charity Pagano | Albany, New York

c.pagano.albany.nyIn 2010, my two year old son, Salvatore was diagnosed with Chiari Malformation, Syringomyelia and Hydrocephalus. We were completely taken by surprise. He had taken a fall and after a precautionary CT scan revealed he had Hydrocephalus( unrelated to the fall) he was sent to a neurosurgeon who subsequently diagnosed him with Chiari and Syringomyelia. We were reeling from the news. Our two year old, who we thought was perfectly fine might need brain surgery. I was searching for any information I could find since I had never heard of Chiari before.

I came across the Conquer Chiari website and discovered that there was going to be a walk in my area in two weeks. My family and I attended the walk and met so many people struggling with Chiari. We gained valuable knowledge from experienced Chiarians. My son has now endured 2 brain surgeries and is doing well.

I was so thankful for the support we received at the walk that when the opportunity opened up to take over the walk in Albany, I jumped at the chance. I am so motivated to share our story and help others that might be in the same place we were when we got the diagnosis. It is my goal to raise awareness about this condition and I hope to make an impact by organizing this walk!


Nadine & Gene Horn | Rome, New York

n.horn.rome.nyAfter suffering from migraines/headaches since I was little, followed by various, intense symptoms into my adult years, I was “officially” diagnosed with Chiari in December 2010 and by January 2011 had to stop working due to the severity of my symptoms & still am unable to maintain employment because of this. I saw a Neurosurgeon, who deemed me “non-surgical” at the time, so I basically just had to stumble along trying to find answers, hoping/praying I’d get better.

In September 2011, I attended my 1st CCWAA in Fredericksburg, VA, meeting alot of new friends & the guest speaker, a Neurosurgeon, who (at an appoint in December 2011) determined that I do have CM1, a couple of deteriorating vertebrae in my neck, and Ehlers-Danlos Syndrome. I was supposed to have decompression surgery & neck stabilization, but was unable to go thru with it, due to unforseen circumstances. In addition, and since we’ve moved, I have seen additional Neurosurgeons; however, at this time we have chosen to wait on any surgery unless absolutely necessary.

My husband & I moved to Rome, NY in November 2012, the closest 2 areas that had walk sites were on each end of the state, both of which were approx. 4 hours away from me. Feeling it’s important to raise as much awareness as possible for Chiari & adding locations to allow for closer accessibility (because travel can be difficult for many Chiarians) led me to volunteer to be a site-organizer here. We are stepping into our 5th year as well as looking for additional ways to help raise awareness, including a new endeavor entitled “Stick It To Chiari” – a Hockey/Sports-focused venue.

In The News | Read Article & Watch Video


Angi Barnett | Beavercreek, Ohio

a.barnett.beavercreek.ohWe are Angi Barnett (left) and Samantha Goeller. 2015 will be our 3rd year organizing the walk for CCWAA in Beavercreek, Ohio. Samantha was diagnosed with Chiari Malformation 1 at the age of 15. She will turn 18 in April this year.

Our main goal is to raise awareness of Chiari Malformation. It frustrates us that there is so little information and so few who know about Chiari. Organizing has helped us learn more about Chiari and meet wonderful people going through similar situations. We had 288 participants at our walk last year. We hope to reach 350 this year since we are starting the planning much earlier than last year.





Kristy Gergal | Lancaster, Pennsylvania

k.gergal.lancaster.paMy 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!


Kristen Opfer-Grim | Lehigh Valley, Pennsylvania

k.opher.grim.lehigh.valley.paHi, my name is Kristen and I am the lead organizer of the 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). 6 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 2016!!!

 


Sarah Johnson | Clemson, South Carolina

s.johnson.clemson.scMy name is Sarah E. Johnson. I am a Clemson University Alumna, Medical University of South Carolina student, and a Chiarian. I was diagnosed with Arnold Chiari I Malformation 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 Type 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 case of Chiari is different! We are here to support one another 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 fourth year as a Site Organizer. Our hopes are to bring together fellow Chiari Warriors and community members in the Upstate, while raising funds and awareness for Chiari Malformation research!

Join us and help Conquer Chiari!


Katie Klaehn | Amarillo, Texas

k.klaehn.amarillo.txMy name is Katie Klaehn and I will be organizing my thrid walk in Amarillo, Tx. My Daughter, Micaiah, is 9 years old. I also have a 14 year old, Haleigh and a 6 year old, Londyn along with my biggest cheerleader and supporter, my husband Daniel. Micaiah was diagnosed with Chiari I at 20 months of age and had decompression at 26 months of age. We were lucky to find her Chiari so early and it was only because we thought she was a hearing impaired child and wanted to see the type of damage we were dealing with long term. She spoke her first words 2 weeks after surgery and has not stopped. We have a host of co-diagnosis from the compression on her brain stem that happened in the short 20 months prior to decompression and she lives fighting the daily chiari headache, dizziness, body pain, tiredness, and other daily symptoms that can dictate her life. Her resiliency is the daily motivation for me to raise awareness, fight to raise funds for a cure, and do all I can to provide support to any of the other Chiari parent's out there on this journey or just now starting this journey. Thankfully, I had the blessing of having three Chiarians in my local office when my daughter was diagnosed and met Aimee Zemanek at the DFW walk she organized that helped me feel we can make a difference. She provided great support and love for me and Micaiah and we met other Chiari adults and families along with providing me the encouragement to start a local support group that has 170 members now and gave the final push to start a walk locally that was very successful in our first year. We are excited for 2016 and what is to come!


Claudia Martinez | Houston, Texas

c.martinez.houston.txWhen I was diagnosed, we had never heard of Chiari, and neither had anyone our families; however after my diagnosis I have found that I actually know people with Chiari, and there are a handful of Chiari Warriors in my area. I want to organize the local walk to raise awareness for this disease that affects so many, and yet so few know about. I believe that it’s important to connect the newly diagnosed with experienced Chiarians so that we are able to lean on, help, and learn from one another.

I am very honored to represent Conquer Chiari here in Quincy, IL, and hope to bring the Chiari fighters together with our local community all while raising money for Chiari Malformation research and awareness. #ChiariStrong


Debbie & Breanna Williams | Morgantown, West Virginia

d.b.williams.morgantown.wvWe 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 almost 5 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 18 months 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 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.


Ashley Thompson | Madison, Wisconsin

a.birdsill.madison.wiMy name is Ashley Thompson. I am an Airmen, mother of two, 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!


Angela Zuniga-Meyer | Milwaukee, Wisconsin

a.meyer.milwaukee.wi1997 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.