Chiari Awareness Month
September 1 - September 30
About Chiari Awareness Month
Chiari Awareness Month takes place throughout September each year, including in 2026. The month is dedicated to raising awareness of Chiari malformation, a serious neurological condition in which part of the brain pushes down into the spinal canal. Organisations, patients, families and clinicians use the month to educate the public, fund research and support the many people living with a condition that is still frequently misdiagnosed.
What is Chiari Awareness Month?
Chiari Awareness Month, also known as Chiari Malformation Awareness Month, is an annual health observance held every September. It exists to improve understanding of Chiari malformation, a structural defect in which the lower part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord. The awareness month is championed by patient charities such as Conquer Chiari and the Bobby Jones Chiari & Syringomyelia Foundation, alongside neurosurgeons, researchers and the wider patient community. Its central aim is to shorten the long road to diagnosis that so many patients face and to drive funding into research on a condition that remains poorly understood.
When is Chiari Awareness Month?
Chiari Awareness Month runs for the whole of September every year. In 2026 it begins on Tuesday, 1 September and ends on Wednesday, 30 September. The observance is fixed to the calendar month, so the dates do not change from year to year. Within the month, the Conquer Chiari Walk Across America is traditionally held on the third and fourth weekends of September, making the second half of the month a particular focus for community events and fundraising.
Why Chiari Awareness Month Matters
Chiari malformation is far from rare, yet it is widely under-recognised. Chiari malformation type 1, the most common form, is estimated to affect around 1 in 1,000 people symptomatically, while as many as 1 in 100 meet the radiological criteria on imaging. The increasing use of MRI scanning has revealed that the condition is more common than once believed. Despite this, many patients spend years seeking answers, as the hallmark symptom, a headache at the back of the head made worse by coughing, sneezing or straining, is easily mistaken for migraine or other complaints.
The condition can be life-altering. Pain affects roughly 60 to 70 per cent of patients, and many also experience problems with balance, numbness or weakness in the limbs, difficulty swallowing and disturbed sleep. Chiari malformation frequently occurs alongside syringomyelia, a fluid-filled cyst on the spinal cord, in 60 to 70 per cent of cases, which can in turn lead to progressive scoliosis. Raising awareness helps patients recognise their symptoms sooner, encourages earlier referral to specialists, and builds the public support needed to fund research into better treatments.
How to Get Involved in Chiari Awareness Month
There are many ways to take part, whether you are a patient, a carer or simply want to support the cause.
- Wear purple – Purple is the colour associated with Chiari awareness. Wearing it during September, or hosting a “wear purple” day at work or school, is a simple way to start conversations.
- Join a Conquer Chiari Walk – The Conquer Chiari Walk Across America is a series of local walks held across September. You can join an existing walk or take part virtually from anywhere in the world.
- Share verified information – Post facts about symptoms and diagnosis on social media so that others might recognise the signs in themselves or a loved one.
- Fundraise for research – Conquer Chiari is the largest non-governmental funder of Chiari research, and donations directly support studies into causes and treatments.
- Light it up purple – Landmarks including Niagara Falls have been illuminated purple for Chiari awareness. Ask local buildings or councils to take part.
- Support a patient you know – Living with Chiari can be isolating. Checking in on someone affected, or offering practical help, makes a real difference.
- Advocate for proclamations – Many regions issue official proclamations recognising September as Chiari Malformation Awareness Month. Encouraging local representatives to do the same raises the condition’s profile.
- Learn the warning signs – Familiarise yourself with the symptoms so you can encourage anyone experiencing persistent occipital headaches to seek a proper assessment.
History of Chiari Awareness Month
Chiari malformation is named after the Austrian pathologist Hans Chiari, who first described the condition in the early 1890s. For much of the twentieth century it remained obscure, diagnosed mainly at autopsy or in severe cases. The arrival of MRI in the 1980s transformed understanding, allowing clinicians to detect the malformation in living patients and revealing that it was far more widespread than previously assumed.
The modern awareness movement grew out of the patient community in the United States. Conquer Chiari was founded in 2004 by Rick Labuda, an engineer and Chiari patient who understood first-hand the frustration of living with the condition. Drawing on his own experience, he built an organisation focused on education, awareness and research, and authored a widely read patient guide, first published in 2008. As the patient community organised, September became established as the month for awareness, supported by charities, walks and an expanding network of advocates.
Over the years the observance has spread beyond the United States as patients and clinicians around the world have adopted it. While much of the formal recognition, including state proclamations and the Walk Across America, originates in the US, the awareness month is now marked internationally, reflecting the global reach of a condition that does not respect borders. If you are interested in related neurological causes, you might also explore International Ataxia Awareness Day, which falls within the same month.
Noteworthy Facts About Chiari Awareness Month
- Chiari malformation type 1 is thought to affect around 1 in 1,000 people symptomatically, with up to 1 in 100 meeting radiological criteria.
- The condition is named after pathologist Hans Chiari, who described it in the 1890s.
- Conquer Chiari was founded in 2004 and is the largest non-governmental funder of Chiari research.
- Syringomyelia, a fluid-filled cyst on the spinal cord, coexists in 60 to 70 per cent of Chiari patients.
- The signature symptom is an occipital headache worsened by coughing, sneezing or straining, which is why diagnosis is so often delayed.
Frequently Asked Questions
What is Chiari Awareness Month?
Chiari Awareness Month is an annual observance held throughout September that raises awareness of Chiari malformation, a neurological condition in which part of the brain extends into the spinal canal. It promotes earlier diagnosis, patient support and research funding.
When is Chiari Awareness Month in 2026?
It runs for the whole of September 2026, from Tuesday, 1 September to Wednesday, 30 September.
Who organises Chiari Awareness Month?
There is no single governing body, but patient charities lead the effort, most notably Conquer Chiari and the Bobby Jones Chiari & Syringomyelia Foundation, alongside neurosurgeons, researchers and patient advocates.
Spread the Word
Help raise awareness by sharing Chiari Awareness Month with your friends, family and followers. Use the hashtags #ChiariAwarenessMonth and #ConquerChiari on social media, and consider adding a splash of purple. The more people who recognise the symptoms of Chiari malformation, the sooner patients can find a diagnosis and the right support.
Related Awareness Days
- TM (Transverse Myelitis) Awareness Day – Another observance for a neurological condition affecting the spinal cord, with overlapping symptoms and patient experiences.
- World Mitochondrial Disease Week – A September awareness week highlighting a group of complex, often under-recognised conditions.
- International Ataxia Awareness Day – Marked in September, focusing on disorders that affect balance and coordination, symptoms that some Chiari patients share.
Links
2026 Awareness Days Wall Planner
Every key awareness day at a glance. Perfect for offices, staff rooms, and team planning.
View Calendar →
