The Ann Conroy Trust is the UK’s only educational organisation
A message from the chairman
Welcome! If this is your first visit then you have probably been diagnosed, recently, with syringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more or Chiari malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms.. If so, we hope that you will find useful information that will help you understand something about these uncommon neurological conditions, with strange-sounding names, of which you had never heard before. If you have visited us before then we trust that, in our various pages, you will find additional material of value or general interest. We aim to help people “live with”, rather than “suffer from”, these unusual neurological disorders.
Please note, however, that we are a small charity, run entirely by volunteers, being a group of patients, healthcare professionals, their families and friends. We are not a government agency and are not part of the NHS. We endeavour to assist people living with syringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more &/or Chiari but, at times, may be unable to provide comprehensive support, for which we apologise. We will post additional notices, from time to time, relating to our various services on our news page.
Importantly, the Ann Conroy Trust does not give medical advice. Instead, we aim to help those diagnosed with syringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more, Chiari malformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms., or related conditions, to understand what their hospital specialist is saying to them. Any decisions that you may make, about surgical intervention, medical treatment or otherwise, must be based on your discussions with qualified health professionals. The Ann Conroy Trust Charity does provide a list of UK-based hospital specialists, who have declared an interest in treating the conditions with which the Charity is concerned.
We like to keep you up to date on news & developments as soon as we can. Here’s a few of our latest posts.
To increase knowledge and understanding of SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more & Chiari MalformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms. and associated conditions, and to provide support for patients, relatives, and carers.
The Ann Conroy Trust (ACT) was established in 1980 by Ann Conroy. As a SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more patient herself, Ann realised others living with the conditions and their carers needed support. Raising funds to enable research into the condition of SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more and its associated disorders was very important to Ann. Our charity is run & supported entirely by our wonderful volunteers. We are the only organisation in the UK providing educational material about SyringomyeliaA cavity, within the spinal cord, which is filled with cerebrospinal fluid. Syringomyelia cavities come in various “shapes and sizes”, from short, spindle-shaped cavities through to long, tense cavities extending throughout the greater part of the spinal cord. Read more and Chiari MalformationAn anatomical abnormality affecting the lowermost part of brain, where it joins the spinal cord, at the top of the neck. Various sub-types are described – see under their individual names. The term hindbrain hernia is sometimes used to incorporate all forms..
We share updates, awareness posts and useful information on Instagram. Here is a selection of our most recent posts.
Did you know a condition is considered rare if it affects fewer than 1 in 2,000 people? Yet globally, around 300 million people are living with a rare disease💜🎗️
This #RareDiseaseDay the Ann Conroy Trust are proud to stand with everyone affected by Chiari malformation, syringomyelia, and their associated conditions.
Our charity exists to support people living with these complex neurological conditions. We provide trusted information, raise awareness, and create a community where people feel heard, understood and less alone.
If you’d like to get involved today, here are a few things you can do:
💬 Listen to people with lived experience.
📢 Amplify voices by sharing posts and engaging with our community.
💻 Take time to educate yourself about these conditions and their impact.
🌀 Diversify your feed and follow those living with rare and complex conditions.
Most importantly we encourage you to keep the conversation going because rare is more common than you think! Everyone deserves to be believed, supported and cared for — whether their condition is complex, visible, invisible, well understood or not.
#EDS #EhlersDanlosSyndrome #TetheredCordSyndrome #BasilarInvagination #ChiariMalformation #Syringomyelia #Syrinx
The West Yorkshire Local Support Group are meeting up again next month!
🗓️ Monday 23rd March 2026
🕡 6.30 pm – 8:30 pm
📍 Statement Suite, Aspire, 2 Infirmary Street, Leeds LS1 2JP
This relaxed, in-person meeting led by Julia Brannigan is a chance to connect with others who understand what it’s like to live with Chiari Malformation, Syringomyelia, and related conditions.
You’ll be very welcome to join, whether this is your first time attending or you`ve taken part in a session before. There will be tea, coffee, mineral water, and biscuits available for you to enjoy, so come along, grab a cuppa and be part of the conversation. 🍪☕️
If you’d like to attend, please let us know by emailing your contact details to: info@annconroytrust.org
#ChiariMalformation #Syringomyelia #SupportGroup #Leeds #ChronicIllnessCommunity #WestYorkshire
After a diagnosis of Chiari malformation, many people find themselves asking difficult family questions.
💭 Was this passed down to me?
💭 If I have, or hope to have children - could I pass it on to them?
When people talk about something being hereditary, they usually mean it’s passed down through genes. That’s different from “congenital,” which simply means present at birth.
Some conditions are both. Others are one or the other. With Chiari, the picture is nuanced.
Chiari Type 2 is typically present at birth and can be linked to spina bifida, a condition which can sometimes run in families. Chiari Type 1, however, is often discovered later in life and isn’t currently classed as a hereditary disorder.
It’s important to say that we cannot provide medical advice or definitive answers about individual risk. What we can do is share balanced, evidence-based information and help you understand what is currently known.
If you’re navigating these concerns, you can read more about this topic on our website by clicking the link in bio.
#ChiariMalformation #ChiariAwareness #ArnoldChiari #SpinaBifida #RareDisease
The Motability Scheme helps people with disabilities or long-term health conditions use their mobility allowance to lease an accessible car, scooter, or powered wheelchair 🚙 ♿️
For people living with Chiari Malformation or Syringomyelia, having the right vehicle and adaptations can make everyday journeys more comfortable, reduce fatigue, and support greater independence.
There are two free, two-day Motability Scheme Live events taking place this year:
Birmingham | NEC (halls 17 to 19), on Friday 15 and Saturday 16 May
Edinburgh | Royal Highland Centre, on Friday 11 and Saturday 12 September
These welcoming events give you the chance to explore everything the scheme has to offer in one place. You’ll have the chance to:
• See and test the latest accessible cars
• Speak to knowledgeable advisers about vehicles, adaptations, and eligibility
• Get answers to your questions in person
• Discover practical options to support your daily life
Whether you’re thinking about changing your vehicle, exploring adaptations, or simply learning more about the scheme, this event is designed with you in mind.
For more information, please visit @motabilityscheme
#MotabilitySchemeLive #Motability #AccessibleCars #MobilitySupport #IndependentLiving #DisabilitySupport #ChiariMalformation #Syringomyelia
For many people living with Chiari Malformation or Syringomyelia, “How are you?” can be a difficult question to answer.
If you’re checking in with someone, a more specific or open question can sometimes make it easier to start a conversation. It can also help to give them space to share as much, or as little, as they feel comfortable with.
And if that conversation feels bigger than either of you expected, support is available.
Our confidential telephone helpline is run by trained volunteers who understand these conditions and the challenges they bring. Whether someone needs reassurance, information, or simply a listening ear, we’re here.
You can call us on 03330 149 450 during our opening hours 📞💬
18:00 to 20:00 on Monday
10:00 to 14:00 and 18:00 to 20:00 – Tuesday to Thursday
09:30 to 11:00 on Saturday
#HelplineAwarenessDay #ChiariMalformation #Syringomyelia #AnnConroyTrust #NeurologicalHealth
A carer is anyone who looks after a family member, partner, or friend who cannot manage without support.
If you are in a caring role, you may be juggling a lot of responsibilities. It`s important to remember that you do not have to manage everything on your own. Looking after your own wellbeing, asking for help, and reaching out for advice when you need it are all important parts of caring.
Knowing where to turn for guidance is not always easy, so we`ve gathered some information and points of contact that could help you.
• Financial guidance
• Practical help and support
• Looking after your own health and wellbeing
• Emergency planning
Visit the `Guidance for Carers` page under the information tab on our website to explore the support available. Link in bio.
#CarersSupport #ChiariMalformation #ArnoldChiari #Syringomyelia #Syrinx
"Our youngest son is called Ben. He was 3 years old when we found out that there was a problem with his brain. Up to that point, there was no inkling that something could be wrong; it had never crossed our minds..." 💜
In this blog post, Ben`s loved ones share how his Chiari Malformation diagnosis shaped their lives, relationships, and the way they support one another.
From managing symptoms and medical appointments to navigating uncertainty about the future, their journey highlights the emotional and practical impact a neurological condition can have on everyone involved.
They hope to raise awareness and offer reassurance to other families walking a similar path by sharing their experience. Visit our website to read their story. Link in bio.
#ChiariMalformation #ChiariAwareness #InvisibleIllness #ChiariWarrior #ArnoldChiari
The results of the recent UK Chiari 1 Study found that headache was the most common symptom reported by patients in the group 🧠🌀
There are many different types of headaches, but in this post, we wanted to focus on the difference between a Chiari headache and a migraine. Understanding your symptoms can make it easier to find the right support.
Migraines are often described as a throbbing pain on one side of the head. They may last for hours or days and can include nausea, sensitivity to light or sound, dizziness, or visual aura.
Chiari headaches are usually felt at the back of the head and into the neck. They are often short-lived and can be triggered by coughing, sneezing, straining, or laughing. Some people may also experience numbness, balance problems, muscle weakness, vision changes, or difficulty swallowing.
Because symptoms can overlap with other conditions, it is important not to self-diagnose. If you are experiencing persistent or concerning headaches, we encourage you to seek advice from a qualified healthcare professional.
#ChiariMalformation #ChiariAwareness #NeurologicalConditions #Migraine #HealthResearch
Take part in two days of discovery at Naidex 2026!
With nearly 200 exhibitors, live talks, interactive experiences, and specialist content areas, this event brings together the latest support, technology, and ideas for the disability community.
🗓️ 25-26 March
📍 Birmingham NEC
🌟 FREE Entry | FREE parking Blue Badge Holders
If you`re living with Chiari Malformation, Syringomyelia or other associated conditions, Naidex could be a valuable opportunity to explore mobility solutions, learn from experts, and connect with others who understand the challenges of living with a neurological condition.
The Mobility Test Track allows you to try different mobility equipment across a range of terrains, helping you find solutions that may make everyday life a little easier. You can also look at accessible vehicles, hoists, and equipment designed to support comfort and independence.
If you would like to attend, please visit their website to register your place. Link in bio.
#Naidex #NECBirmingham #AccessibilityMatters #NeurologicalConditions #NeuroRehab
