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 there is more than one type of Chiari Malformation? 🧠
Types 1 and 2 are the most commonly discussed, but Chiari malformations are also recognised in some cases as types 0, 1.5, 3 and 4.
Chiari malformations happen when parts of the brain sit lower than they should. This creates pressure and affects the flow of fluid around the brain and spine.
For some people, symptoms may not appear until later in life. Others are diagnosed from birth, often alongside related conditions.
Understanding the different types can help make sense of the condition and the experiences that come with it - whether you’re living with Chiari yourself or supporting someone who is 💜
For more information or some further support, please explore the resources available on our website. Link in bio.
#NeurologicalHealth #ChiariMalformation #ChiariAwareness #ChiariWarrior #ArnoldChiari
The Priority Services Register is a free service that offers extra support if you’re living with a long-term medical condition such as Chiari Malformation or Syringomyelia.
Many people find that joining the register brings added reassurance. If you are chronically ill, you may be eligible for additional help from your energy or water supplier, especially during power cuts or service disruptions.
Being on the register can give you access to a direct phone number for quicker support, allow you to nominate someone to speak on your behalf, and agree on a password system so you feel safe when someone visits your home. You can also receive updates during power cuts, be informed about planned interruptions, and sign up for free 24-hour power cut alerts.
If you would like to know more about the register, we’ve put together helpful information about who can apply, what support is available, and how to sign up.
Click the link in bio to visit our website for further guidance.
#PriorityServicesRegister #ChronicIllness #ChiariMalformation #Syringomyelia #DisabilitySupport #AccessibleLiving
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 📞
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
Syringomyelia cavities can look very different from person to person.
They can be small and localised, affecting just one part of the spinal cord, or larger and more extensive. In rare circumstances, cavities can stretch along the entire length of the spinal cord! The size and shape of a syrinx can influence the type and severity of symptoms someone experiences.
Although it can develop without any obvious reason, more often than not, there is a recognisable, underlying cause. The most common of these is a hindbrain hernia, known more commonly as a Chiari malformation.
To learn more about Syringomyelia and related conditions, visit the link in our bio.
#Syringomyelia #Syrinx #ChiariMalformation #NeurologicalHealth #HindbrainHerni
The West Yorkshire Local Support Group are meeting up next week!
🗓️ Monday 23rd March 2026
🕡 6.30 pm – 8:30 pm
📍 Statement Suite, Aspire, 2 Infirmary Street, Leeds LS1 2JP
As well as a general catch-up, this session will focus on two key topics that many people living with Chiari Malformation and Syringomyelia may relate to.
Within the group, we will discuss experiences of not feeling heard or understood by GPs and consultants, and the impact this can have on people’s confidence when seeking care. There will also be space to talk about experiences of seizures or memory loss, and how these symptoms have been recognised and managed by doctors and clinicians.
These conversations offer an opportunity to share perspectives and reflect on the different ways people navigate their healthcare journeys.
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
If you’ve ever found yourself wondering “What does that even mean?” you’re definitely not alone! 🩺
We understand that doctors often need to use medical terms when explaining complex conditions like Chiari Malformation or Syringomyelia. But often during appointments, there is a lot of information to take in. Even when they try to simplify things, it can still be hard to follow at times.
That’s why we’ve created a Glossary of Medical Terminology, listing many of the words and phrases you might hear during appointments or read in letters from your healthcare team.
We hope it helps things feel a little easier to understand and a lot less overwhelming.
Explore the glossary and find clear explanations by visiting the Ann Conroy Trust website. Link in bio.
#ChiariMalformation #ChiariMalformations #ArnoldChiari #Syringomyelia #Syrinx
Did you know that 1 in 6 people in the UK are living with a neurological condition?
For many, this means navigating a complex and often unpredictable experience that affects both body and mind.
When we think about the impact of conditions like Chiari Malformation, Syringomyelia, Hydrocephalus, and Tethered Cord Syndrome, it’s often the physical symptoms that come to mind. Things like headaches, balance issues, or pain.
Alongside these, people may also experience anxiety, depression, behavioural changes, difficulties with attention and disrupted sleep. These challenges can be just as difficult to manage, but are not always easy to talk about.
Throughout @brainawarenessweek the Neurological Alliance of Scotland, the Northern Ireland Neurological Charities Alliance, and the Welsh Neurological Alliance are running the #DontAssumeImOK campaign.
It’s an important reminder to look beyond what we can see. So, this week, please take a moment to check in and learn more so that you can better understand how to support the people around you 💜
#BrainAwarenessWeek #ChiariMalformation #Syringomyelia #NeurologicalConditions #BrainWeek
This week we are supporting Hydrocephalus Awareness Week, an annual campaign organised by @shineukcharity to highlight what it means to live with Hydrocephalus and the support available 🧠🌟
Hydrocephalus is a condition caused by a build-up of cerebrospinal
fluid (CSF) in the brain. CSF normally cushions and protects the brain and spinal cord, but when it cannot drain or circulate properly, it accumulates within spaces of the brain called ventricles. This can increase pressure and potentially cause harm to the brain tissue.
Hydrocephalus can sometimes be associated with Chiari Malformation, so it`s important to understand the connection between each.
If you would like to learn more about hydrocephalus, Shine has a wide range of helpful information and resources available on their website and social media pages, so do take a look 💻
At The Ann Conroy Trust, we are proud to take part in this campaign as we continue working to raise awareness of rare and complex conditions.
If you`d like to get involved, remember to share posts just like this. Every interaction helps us reach more people and support greater understanding!
#HydrocephalusAwareness #ChiariMalformation #RareConditions #Hydrocephalus #livingWithHydrocephalus
