Chiari and Syringomyelia Australia

11/10/2025

October is Dysautonomia awareness month.

04/10/2025

New research on the use of time-restricted eating (TRE) to improve mitochondrial function, symptoms, and quality of life in POTS! Dysautonomia International funded this study, led by UC San Diego researchers, in which people with POTS consumed all of their calories for the day within an 8-10 hour window. Importantly, this was not intended to be a weight loss diet, and they did not modify the type or or quantity of the food they normally ate. TRE was chosen as a potential POTS treatment to study because it is known to improve immune function, metabolic function, and mitochondrial function - all of which have been implicated in the pathophysiology of POTS.

After 12 weeks of using TRE, limiting caoloric intake to 8-10 hour per day, POTS patients had improved mitochondrial function, improved symptoms (dizziness, palpitations, difficulty breathing, nausea, GI issues, exhaustion, and insomnia), an average reduction in their standing heart rate of 11bpm, and an improvement in quality of life, especially their physical functioning.

Read the full journal article:
https://www.nature.com/articles/s41598-025-16836-2

We'll be hosting a free webinar with the UC San Diego researchers on November 4th from 6-7PM Eastern so that you can ask questions and learn more about this study. Sign up at https://bit.ly/WebinarTaubNov4 Can't join us live? Everyone who signs up for the webinar will be emailed a recording of the webinar a few weeks after it has concluded

We encourage patients to speak with their medical provider or a dietician before trying TRE on their own, especially if you have a history of an eating disorder, as we do not want TRE to trigger or worsen an eating disorder in people who may be at risk.

This research was made possible thanks to donations to Dysautonomia International from our patient and caregiver community. Please consider making a contribution to support even more POTS and dysautonomia research at CureDys.org or hosting a Facebook or Instagram fundraiser at https://www.facebook.com/fund/DysautonomiaInternational/

Thank you to all of the patients who volunteered for this study and the research team at UCSD!

30/09/2025

💟 𝐂𝐡𝐢𝐚𝐫𝐢 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐢𝐟 𝐘𝐞𝐚𝐫 𝐑𝐨𝐮𝐧𝐝 💟

💜 in the comments if you are going to continue to raise awareness year long.

This might be the last day of Chiari Awareness month but that doesn’t mean we can or should stop pushing for awareness.

Our disorder doesn’t go away cause awareness month ends. It’s 24/7 and we won’t stop raising awareness till it’s stopped.

𝐂𝐡𝐢𝐚𝐫𝐢 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

#🫥

29/09/2025

Chiari can Make It Hard To Move

PDF Version: https://www.conquerchiari.org/library/index/click/852

29/09/2025

𝐖𝐡𝐚𝐭 𝐰𝐨𝐫𝐝 𝐝𝐞𝐟𝐢𝐧𝐞𝐬 𝐂𝐡𝐢𝐚𝐫𝐢 𝐟𝐨𝐫 𝐘𝐨𝐮?
These are just some words previously submitted about what Chiari means, encompasses or what defines Chiari to Chiarians.

What would you add?

𝐂𝐡𝐢𝐚𝐫𝐢 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

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29/09/2025

27/09/2025

Tomorrow, September 27th, 2025, from 10:00 to 10:15 PM EDT, Niagara Falls will be illuminated in PURPLE to raise awareness for Chiari Malformation! 💜🌊✨

Watch this stunning display live from anywhere in the world at www.niagarafallslive.com! 🌍📲

A huge thank you to Haley and her mom, Agnes Starr, for working diligently to make this happen each year.

We would also like to thank the Niagara Falls Illumination Board for their continued support to our mission.

Please note, the shade of purple may vary due to weather conditions and mist. It might appear more bluish or pinkish, but it’s always a beautiful show of support for Chiari awareness! 🎗️💜

That’s not all—The Peace Bridge and Buffalo Botanical Gardens will also be glowing purple in solidarity! Let’s light up the night for a great cause! 💪💜

21/09/2025

𝐈𝐧 𝐭𝐡𝐢𝐬 𝐟𝐨𝐫 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬
Awareness is essential for this disorders few people know of. We can only do so much and it’s only with the help of the community that our voices can be heard far and wide.
Show us awareness is essential to you and like, comment and share!

𝐂𝐡𝐢𝐚𝐫𝐢 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚
@𝐜𝐦𝐬𝐦𝐚𝐮𝐬
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20/09/2025

𝐂𝐨𝐦𝐨𝐫𝐛𝐢𝐝 𝐂𝐨𝐧𝐝𝐢𝐭𝐢𝐨𝐧𝐬 𝐨𝐟 𝐂𝐡𝐢𝐚𝐫𝐢
𝐷𝑜 𝑦𝑜𝑢 ℎ𝑎𝑣𝑒 𝑎𝑛𝑦 𝑎𝑛𝑑 𝑖𝑓 𝑠𝑜 𝑤ℎ𝑖𝑐ℎ?

These are just some of the common comorbid conditions seen with Chiari Malformations that we will touch on during awareness month.

These conditions are important to be aware of as the most common complications or reasons surgery isn’t effective is usually due to an unknown comorbid. Some can exert extra pressure of the cerebellum like Intracranial Hypertension and Hypotension, Tethered Cord. Others can impact anatomy or require special attention or sometimes extra surgeries.

Others include CSF leaks, Hydrocephalus
𝐂𝐡𝐢𝐚𝐫𝐢 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚
@𝐜𝐦𝐬𝐦𝐚𝐮𝐬
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Ehlers-Danlos Australia Craniocervical Instabilities Awareness Tethered Cord Australia

20/09/2025

Introducing the Chiari 1 Malformation Severity Classification System:

Background/Objectives: Chiari 1 malformation (CM-1) is a structural abnormality characterised by cerebellar tonsillar descent of 5 mm or more through the foramen magnum. Despite improved imaging, surgical criteria remain inconsistent. This study evaluates the correlation between classic...

19/09/2025

𝐓𝐡𝐞 𝐂𝐡𝐢𝐚𝐫𝐢 𝐌𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧𝐬
Last week we posted asking which type everyone was. We thought to introduce the different types and how they have changed over time. The current 4 based on the 2022 consensus paper are:
• 𝐂𝐡𝐢𝐚𝐫𝐢 𝐌𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝟏 (𝐂𝐌𝟏)
• 𝐂𝐡𝐢𝐚𝐫𝐢 𝟐/𝐀𝐫𝐧𝐨𝐥𝐝 𝐂𝐡𝐢𝐚𝐫𝐢 𝐌𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 (𝐂𝐌𝟐/𝐀𝐂𝐌)
• 𝐂𝐡𝐢𝐚𝐫𝐢 𝐌𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝟎 (𝐂𝐌𝟎)
• 𝐂𝐡𝐢𝐚𝐫𝐢 𝟏.𝟓/𝐂𝐨𝐦𝐩𝐥𝐞𝐱 𝐂𝐡𝐢𝐚𝐫𝐢 (𝐂𝐌𝟏.𝟓)

Some people still include Chiari 3 and Chiari 4 among research and others feel they are seperate entities that don’t quite fit within the cerebellar ectopia groups. Same with Acquired Ectopia some call Acquired Chiari but others feel that a disorder with different causes and treatments don’t quite fit and can cause confusion by labelling all cerebellar herniations as “Chiari”.

Due to the many different beliefs we are sticking to the 2022 consensus paper for consistency.

Ref: https://pubmed.ncbi.nlm.nih.gov/34129128/

𝐂𝐡𝐢𝐚𝐫𝐢 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚
@𝐜𝐦𝐬𝐦𝐚𝐮𝐬
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