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.
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
The Blue Badge scheme allows people with severe mobility problems and those with certain other disabilities or health conditions to park close to places they wish to visit.
Many people find that having a Blue Badge makes everyday journeys a little bit easier. It can reduce the physical strain of walking long distances and provide reassurance when travelling to appointments, shops, or social activities.
If you would like to know more about the scheme, we’ve put together lots of information about who can apply, what you’ll need, how to show proof of eligibility, and what to do if you need to appeal.
Click the link in our bio to visit our website for further guidance.
#BlueBadge #Accessibility #DisabilitySupport #ChronicIllness #IndependentLiving
The Ann Conroy Trust is the UK’s only educational organisation for those living with Chiari Malformation, Syringomyelia, and associated conditions.
Our mission is to increase knowledge and understanding of these rare neurological disorders whilst providing support for patients, relatives, and carers.
We rely on financial support to keep our resources, helpline, and information freely available to everyone. Donations also help us fund research, educational events, and other activities that make a real difference to people’s lives.
Every contribution, big or small, helps us continue and for that we are hugely appreciative of!
Here are three simple ways to support The Ann Conroy Trust:
🌟 You can donate online via JustGiving.
🌟 Organise your own fundraising event or support our cause via EasyFundraising.
🌟 Share our page with your friends, family and loved ones.
Visit our website to find out more - Link in bio.
#CharitySupport #Fundraising #ChiariMalformation #Syringomyelia #NeurologicalDisorders #AnnConroyTrust
Living with Chiari Malformation, Syringomyelia, or a related condition can feel overwhelming at times. Having someone to talk to who truly understands what you are going through can make a real difference.
Our confidential telephone helpline is run by trained volunteers who have lots of insight and experience with these conditions. Whether you are newly diagnosed, supporting someone you care about, or facing a difficult decision about treatment, we are here to listen and offer support.
Call us on 03330 149 450 during our opening hours to speak with someone who understands. 📞
Today we`re joining @mindcharity`s #TimeToTalk campaign to encourage you to brave the big talk 💙
Living with a rare condition such as Chiari Malformation or Syringomyelia can affect more than just physical health. Ongoing pain, fatigue, uncertainty and feeling misunderstood can all have a real impact on emotional wellbeing. Yet speaking honestly about these feelings is not always easy, especially when others may not fully understand what life with a chronic condition is like.
Time to Talk Day is a reminder that open conversations matter. Being brave enough to share how you are really feeling, and taking the time to listen to others, can help break down stigma and make no one feel alone.
At The Ann Conroy Trust, we encourage our community to start those conversations, seek support when needed, and know that it is okay to talk about the difficult things.
If you need some support, please call our Helpline - 03330 149 450
#BraveTheBigTalk #MentalHealthAwareness #ChiariMalformation #Syringomyelia #ChronicIllness
A new episode of our It’s a Rare Thing podcast is now available 🎙️🎧
In this episode, you’ll hear a deeply moving story from a young woman whose life changed dramatically at just 20 years old.
After falling from a horse, Heidi sustained a traumatic spinal injury that left her paralysed from the chest down.
Just two weeks prior to her hospital discharge, she noticed that she couldn’t feel the cooling sensation of her deodorant under her right arm. An MRI scan revealed that she had a spinal cyst. Heidi spoke to us about her experience with decompression surgery and the symptoms she experiences living with these rare conditions.
“If you’ve got nowhere else to go, you either accept it or hit a brick wall and don’t go anywhere. I’m not the kind of person to get stuck. I’ve always believed in the power of positive thoughts. Even before my spinal injury there’s always been a plan B, so I’ve always told myself: let’s deal with this. We can do this.”
You can listen to the latest episode now through our website or on YouTube. Link in bio.
#ItsARareThing #AnnConroyTrust #Syringomyelia #Syrinx #SpinalCordInjury
