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Latest research update...provided by Conquer Chiari!

February 2018 Research Update

CHIARI STRONG has launch their online retail store!! Please check it out!


“Conquering chiari malformation one purple product at a time." Profit from every purchase is reserved for chiari malformation awareness & philanthropy projects. We have Retail for the chiari malformation survivor & beyond. Shop Chiari Strong™.

Share these in honor of this being our month to raise awareness!

So spread the word, answer those questions and let's educate some people this month!

It's our month to roar Warriors!!



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Chiari Warriors Foundation updated their cover photo.
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Warrior's this is a MUST READ: Amazing article from KVUE

The neurosurgeon that did my second decompression and my tethered cord repair, Dr. Bolognese, said the group plans to abolish the 5 mm rule which would have a positive economic impact on many of you.

"The 5 mm rule can give the insurance (companies) the grounds for denial for proposed surgery when there is a herniation that is shorter than 5 mm."


This is fantastic news for those out there that are being rejected from insurance because they are 5mm or less in their herniation!

They are also looking to rename our disorder...from Chiari Malformation to Chiari Anomaly. Which, I think is a better name. With 85 different symptoms (memory loss, headaches, blurred vision, numbness, nausea....) anomaly makes more sense.

We are also far from alone in this is believes that saying 1 in 1000 people have Chiari is extremely conservative.

Jenni Lee, an Anchor on KVUE was diagnosed this year and will be a very loud voice for all of us!

Please check out:
(American Syringomyelia & Chiari Alliance Project)
Daniel West's funding raising page:

Stay strong my Warriors!

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After getting her diagnosis of Chiari Malformation One,  Jenni Lee  is now on a mission to raise awareness about the brain disorder.

Research and education continues...

Recently, Johns Hopkins neurosurgeon Judy Huang hosted a webinar on Chiari malformations, a condition where the cerebellum, at the back of brain, slides into th...e space of the upper spine. Here are three takeaways:
1. In a Chiari 1 malformation, too little space in the lower part of the brain forces brain tissue (called the cerebellar tonsils) into the spinal canal.
2. Chiari 1 malformation symptoms vary with the individual; headache and neck pain are two of the most common symptoms people have related to Chiari 1 malformation. However, many people with the condition experience no symptoms at all.
3. An MRI scan is the most common way doctors diagnose the condition. Often, a patient is undergoing this imaging test for a completely separate reason, and the doctor notices the malformation.

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Please share!!

Join Johns Hopkins neurosurgeon Judy Huang on Tuesday, May 16, from 7 to 8 p.m. ET discuss Chiari malformations, a condition where the cerebellum, at the back of brain, slides into the space of the upper spine.

Sign up to participate in our free online seminar.


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Chiari Malformation Awareness

Please also comment with your story or advice below . Thank you for your support !

Stay strong my Warriors!! You are not alone and deeply loved! 💜💪🏼

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We can all identify with this one at various levels. #Syringomyelia and #Chiari are complex and there are what we can only term as exacerbations and remissions... that repeat in cycles over and over again. One "good" day could result in many days in bed "paying" for the normal activity and for some it can be a hefty price! For those of you struggling with this one we want to say you are never alone and here you are understood!

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"I am constantly frustrated by trying to live in a 'healthy person’s' world, knowing that I am not functioning on the same level as everyone around me."

Here is a little holiday humor from my family to yours!
Christmas is a time for nostalgia, but it is also a time for making new memories. Enjoy the fellowship of new friends, and cherish the company of family in this season of loving and sharing. Warriors, I am proud of your fight, your strength and the lives you live. Celebrate with your loved ones, remember the good times and start making plans for a better new year.

Merry Christmas and Happy New Year Warriors!

'Tis the season to be twerky! Cast five in our naughtiest holiday dance video yet, no "butts" about it!

Happy Thanksgiving Warriors!!

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