The Ann Conroy Trust is the UK's only educational organisation.
For those living with Chiari Malformation, Syringomyelia, and associated conditions
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 syringomyelia or Chiari malformation. 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 syringomyelia &/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 syringomyelia, Chiari malformation, 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.
As it’s Syringomyelia Awareness Month we thought we’d revisit an episode from our It’s a Rare Thing podcast 🦄🎙️
We spoke to Ian about his experience of living with Syringomyelia, and how he has adapted to life with a limiting disability. He shares his journey from early childhood, including being misdiagnosed as a toddler, through to the progression of his condition over time.
During the episode he reflects on major moments in his life, including surgery to relieve pressure on his spinal cord, and the gradual changes to his mobility.
One of the most powerful parts of Ian’s story is how he reframes challenges. He describes transitioning to using a wheelchair not as a loss, but as a form of independence.
Although this episode may not be new, Ian’s perspective remains just as relevant and it’s important to platform stories like this.
If you’d like to have a listen, send us a DM and we`ll share the link with you. You can also search `It’s a Rare Thing` on YouTube.
#SpinalCordInjury #Syringomyelia #Syrinx #SyringomyeliaAwareness #AnnConroyTrust
Did you know that May is Syringomyelia Awareness Month? 💜🎗️
As the UK’s only educational organisation dedicated to supporting those affected by Chiari Malformation, Syringomyelia and associated conditions, the Ann Conroy Trust is committed to increasing knowledge and understanding.
Our aim is to provide reliable information and compassionate support for patients, their relatives and carers, helping them feel informed, empowered and less alone.
By raising awareness, we hope to improve early recognition, access to care and understanding within the wider community. Together, we can make sure that no one has to face these complex conditions without support.
Find out more about who we are and what we do by clicking the link in our bio.
#Syringomyelia #Syrinx #ChiariMalformation #NeurologicalHealth #HindbrainHernia
Syringomyelia is a rare condition that mainly affects the spinal cord.
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.
Learning more about the condition can help you understand what to expect and find the right support. Read more about Syringomyelia and Chiari Malformation on our website. Link in bio.
#Syringomyelia #Syrinx #ChiariMalformation #HindbrainHernia #AnnConroyTrust
The West Yorkshire Local Support Group are meeting up again this month!
🗓️ Thursday 28 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
Living with conditions like Chiari Malformation or Syringomyelia can affect far more than physical health 💜🎗️
Symptoms can change from day to day, and the impact is not always visible to others. Feeling listened to, understood and supported can make a real difference. Small, thoughtful actions can help someone feel less alone and more able to cope with the challenges they face.
Support does not need to be complicated. It can be as simple as checking in, being patient, and taking the time to understand what someone is going through.
If this resonates with you, consider sharing this post to help raise awareness and encourage more understanding for those living with these conditions.
#ChiariMalformation #Syringomyelia #ChronicIllness #InvisibleIllness #SupportMatters
Are you a healthcare professional with an interest in Chiari Malformation, Syringomyelia, or related conditions?
The British Syringomyelia Chiari Group (BSCG) brings together neurosurgeons, neurologists, scientists and clinicians who are working to better understand, treat and research these complex conditions. Formed under the Ann Conroy Trust, the group plays an important role in sharing knowledge and improving patient care.
By joining, you can:
• Connect with a network of professionals with shared clinical and research interests
• Take part in meetings, conferences and collaborative projects
• Contribute to developing best practice and future research
• Stay informed about the latest developments in this specialist field
Whether you are actively treating patients or have a growing interest in these conditions, becoming part of the group is a valuable way to expand your knowledge and contribute to progress in care.
Click the link in our bio to visit our website & find out more.
#ChiariMalformation #Syringomyelia #Neurosurgery #Neurology #HealthcareProfessionals #MedicalResearch
A hospital stay is rarely something anyone looks forward to, but thinking about your comfort as well as the essentials will make the experience more pleasant 😌💭
Bringing extra nightwear and underwear can help you feel more at ease, especially in the first few days. Lip balm, moisturiser and mouth sweets will help with dryness, while your favourite drinks and light snacks can keep your energy up if your appetite is low.
When you have a bit more energy, having something simple to pass the time can help you to relax. Magazines, music or audiobooks are often easier to manage than books, and a phone or tablet can help you stay connected with your family and friends.
Our member Lynne created a helpful guide based on her own experience as an inpatient for craniovertebral decompression surgery, and later a revision operation. If you would like to know more about what to expect during a hospital visit, send us a DM and we will send the link to you!
#AnnConroyTrust #ChiariMalformation #ArnoldChiari #Syringomyelia #Syrinx #neurologicalhealth
Receiving a diagnosis can feel overwhelming, but you are not alone.
At The Ann Conroy Trust, we’re here to help you understand your condition and feel more confident about what comes next.
We offer a wide range of support and information to help you learn about your diagnosis, manage symptoms, and know what to expect. Our website includes detailed explanations of these conditions, a glossary full of medical terminology to help you make sense of complex terms, and even a list of UK specialists with experience in treating Chiari and Syringomyelia.
We encourage you to explore our website and take time to read through the information available. Building a clearer understanding of your condition is an important first step in living well with it. Link in bio.
#AnnConroyTrust #ChiariMalformation #ArnoldChiari #Syringomyelia #Syrinx #NeurologicalHealth
Finding the right medical support can make a real difference when living with Chiari Malformation or Syringomyelia 🫱🏾🫲🏼
Because these conditions are relatively uncommon, it can sometimes take time to be referred to a specialist who understands them. That’s why we’ve created a list of UK specialists who have declared an interest in treating Chiari, Syringomyelia, and related conditions.
While The Ann Conroy Trust does not offer medical advice or vet individual professionals, our list is designed to help you find the right support through your GP or care team. All listed specialists work within the NHS and have the appropriate qualifications and experience in their field.
We regularly update this information to make it easier for you to take the next step with confidence and find care that’s right for you.
Click the link in our bio to explore the full list available on the ACT website.
#AnnConroyTrust #ChiariMalformation #Syringomyelia #PatientSupport #RareConditionAwareness #NeurologicalHealth #ChronicIllnessCommunity
