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.
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
Many people tell us that, when they consult with their GP about their Syringomyelia or Chiari Malformation, their doctor confesses to having little or no knowledge about these conditions.
You can now help your GP to help you by directing them to a review article written by our chairman for a journal entitled Practical Neurology.
This is a well-established publication, which is read by many UK neurologists, as well as other specialists and it could also be of use to any GP who may have Chiari or Syringomyelia patients in their practice.
Click the link in our bio and visit the `Helping My GP To Help Me` page under the information tab.
#AnnConroyTrust #ChiariMalformation #ArnoldChiari #Syringomyelia #Syrinx #NeurologicalHealth
We’re really pleased to share that the West Yorkshire Local Support Group will be meeting for the second time tomorrow!
🗓️ Thursday 29 January 2026
🕡 6.30 pm – 8 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.
Whether you came along to our first session or this would be your first time, you’ll be very welcome. 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
We’re pleased to share that the results of The UK Chiari 1 Study have now been published 🌟
This national research project was led and delivered by the British Neurosurgical Trainee Research Collaborative. 20 neurosurgical units across the UK were invited to collaborate on this study, which investigated the quality of life of adults and children living with Chiari 1 malformation.
It followed patients from their first neurosurgical clinic appointment and reviewed outcomes for those managed without surgery over a period of 12 months.
Headache was the most commonly reported symptom overall. Many patients experienced headaches at the back of the head, sometimes worsened by coughing or straining. In adults managed without surgery, improvements were seen after 12 months in areas such as social functioning and bodily pain.
We’re grateful to everyone who took part in the study and proud to have supported this important research. A summary of the results is available to read on our website alongside the full published paper. Link in bio.
#ChiariMalformation #ChiariAwareness #HealthResearch #NeurologicalConditions #PatientCare
If you’re preparing for surgery to treat Syringomyelia or Chiari Malformation, it’s natural to have questions and worries. Headaches are often one of the biggest concerns.
Craniovertebral decompression is a type of surgery designed to correct an underlying anatomical problem. For many people, headaches are the symptom most likely to improve. Some find their headaches reduce significantly, and for others they may ease even if they do not disappear completely.
While everyone’s experience is different, this type of surgery can be life-changing. In some cases, headaches may return over time, but they are often less severe than before. If symptoms do come back, your surgical team can help you explore possible causes and next steps.
If you have any concerns about surgery, read the commonly asked questions on our website. Link in bio 💬
#ChiariMalformation #Syringomyelia #BrainSurgery #PatientSupport #YouAreNotAlone
Chiari Malformation and Syringomyelia are often linked with other conditions that can affect the brain, spinal cord, and nervous system.
For many people, understanding these associated conditions can help make symptoms, diagnoses, and treatment pathways feel a little clearer.
To learn more about these related conditions and how they may connect, click the link in our bio and visit the `conditions` page on our website. 🔍
#EhlersDanlos #TetheredCord #SpinalCordInjury #SpinaBifida #IntracranialPressure
We’re really pleased to share that the West Yorkshire Local Support Group will be meeting for the second time!
🗓️ Thursday 29 January 2026
🕡 6.30 pm – 8 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.
Whether you came along to our first session or this would be your first time, you’ll be very welcome. 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
