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. See also hydromyelia. 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. See also hydromyelia. 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. See also hydromyelia. 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. See also hydromyelia. 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.
Celebrate the little wins. 💜
When you`re living with Chiari Malformation, Syringomyelia or an associated neurological condition, it`s easy to focus on everything you haven`t been able to do.
But every achievement—no matter how small it may seem—is worth recognising.
Getting out of bed, taking your medication, making an appointment, asking for help or remembering to rest are all important steps. They may not feel like big milestones, but they are acts of strength, resilience and self-care.
This National Wellness Month, take a moment to acknowledge the little wins. They all count.
What little win are you celebrating today? 💜
#NationalWellnessMonth #ChiariMalformation #Syringomyelia #AnnConroyTrust
Did you know there are four types of Chiari Malformation? 🧠
Although many people are familiar with Chiari Type I, there are actually four recognised types of Chiari Malformation. Each type affects the brain differently and can vary in severity.
Type I is the most common and is often diagnosed during adolescence or adulthood, while Type II is usually present from birth and is commonly associated with conditions such as Spina Bifida and Hydrocephalus. Types III and IV are both extremely rare and much more severe.
Understanding the different types of Chiari Malformation can help you better understand your diagnosis and the experiences of others within the Chiari community.
Swipe through to learn more about each type. 💜
#ChiariMalformation #RareDisease #NeurologicalConditions #AnnConroyTrust
Every story has the power to make someone feel less alone. 💜
Living with Chiari Malformation or Syringomyelia is different for everyone, but sharing personal experiences can help others feel understood, informed and supported.
Lynn`s story highlights the challenges of recognising symptoms, navigating diagnosis and living with a rare neurological condition. By speaking openly about her journey, she is helping to raise awareness and remind others that they are not alone.
If you`re living with Chiari Malformation, Syringomyelia or an associated neurological condition, we encourage you to read Lynn`s story and explore the experiences shared by others in our community.
📖 Read more patient stories on our website.
#ChiariMalformation #Syringomyelia #PatientStories #AnnConroyTrust
What is Cerebrospinal Fluid (CSF)? 🧠
If you`ve been diagnosed with Chiari Malformation, Syringomyelia or Hydrocephalus, you`ve probably heard the term CSF mentioned by your healthcare team.
CSF, or Cerebrospinal Fluid, is a clear fluid that surrounds and protects the brain and spinal cord. It cushions the brain, supports the spinal cord, carries nutrients and helps remove waste products from the central nervous system.
For people living with Chiari Malformation, the normal flow of CSF can sometimes become disrupted. This disruption can contribute to conditions such as Syringomyelia and Hydrocephalus, which is why understanding the role of CSF is an important part of learning about these neurological conditions.
Knowing the terminology used by healthcare professionals can help you feel more informed and confident when discussing your care.
#ChiariMalformation #Syringomyelia #Hydrocephalus #AnnConroyTrust
We`re here to listen, whenever you need us. 💜
Living with Chiari Malformation, Syringomyelia or an associated neurological condition can sometimes feel overwhelming. Whether you`ve recently been diagnosed, have questions about your condition, or simply need someone to talk to, you don`t have to face it alone.
The Ann Conroy Trust Helpline offers a confidential, supportive space where you can speak to someone who understands. Our volunteers are here to listen, provide information and help point you towards further support where needed.
If you need us, please don`t hesitate to get in touch.
📞 03330 149 450
#AnnConroyTrust #ChiariMalformation #Syringomyelia #Support
Join us at the Ann Conroy Trust Autumn Meeting 2026 🍂
Our Autumn Meeting is an opportunity to come together with others who understand the realities of living with Chiari Malformation, Syringomyelia and associated neurological conditions.
The day will include a guest speaker, expert Q&A panel, opportunities to connect with others in the community, and plenty of time to ask questions and share experiences. Lunch and refreshments are included, with places allocated on a first-come, first-served basis.
📅 Saturday 26 September 2026
📍 Kettering Park Hotel & Spa, Northamptonshire
If you`d like to attend or would like more information, please email info@annconroytrust.org.
We look forward to welcoming you. 💜
#AnnConroyTrust #ChiariMalformation #Syringomyelia #Community
Choose Yourself Today. 💜
When you`re living with Chiari Malformation, Syringomyelia or an associated neurological condition, it`s easy to put everyone else`s needs before your own.
But taking time to look after yourself isn`t selfish ... it`s essential.
Whether that`s resting when you need to, attending a medical appointment, asking for help, or simply giving yourself permission to slow down, choosing yourself can make a real difference to your wellbeing.
Today, we encourage you to do one small thing that`s just for you. Your health matters, and so do you.
#ChiariMalformation #Syringomyelia #Wellbeing #AnnConroyTrust
Symptoms of Syringomyelia
Syringomyelia affects everyone differently, and no two experiences are exactly the same.
While some people experience only mild symptoms, others may notice symptoms that have a greater impact on their daily lives. These can develop gradually over time and may change as the condition progresses.
Common symptoms can include muscle weakness, headaches, balance problems, pain, numbness or tingling, and changes in sensation. Not everyone will experience all of these symptoms, and the severity can vary from person to person.
If you`re experiencing new or worsening symptoms, it`s important to speak to your healthcare team for advice and support.
To learn more about Syringomyelia and the support available from the Ann Conroy Trust, visit our website. 💜
#Syringomyelia #ChiariMalformation #RareDisease #AnnConroyTrust
Sometimes, "How are you?" can feel like one of the hardest questions to answer.
For people living with Chiari Malformation, Syringomyelia and associated neurological conditions, symptoms can change from day to day ... or even hour to hour. It can be difficult to sum up how you`re feeling in just a few words.
Asking more thoughtful, open-ended questions can help someone feel seen, heard and supported. Whether it`s checking in on their pain levels, asking what they need today, or simply giving them space to answer honestly, these small changes can make a big difference.
If you`re supporting someone living with a chronic neurological condition, remember that listening without judgement is often one of the most valuable things you can do. 💜
#ChiariMalformation #Syringomyelia #InvisibleIllness #AnnConroyTrust
