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.
World Physiotherapy Day 💜
Today is World Physiotherapy Day, a chance to recognise the role physiotherapy can play for people living with neurological conditions.
Physiotherapy can support movement, strength, balance and independence, helping people work towards what matters to them, at their own pace and in their own way.
Every step forward counts.
#WorldPhysiotherapyDay #ChiariMalformation #Syringomyelia #AnnConroyTrust
Thinking about joining the Ann Conroy Trust?
There are lots of benefits to becoming a member, from receiving our biannual magazine and being part of a friendly community, to opportunities to take part in research projects and hear about upcoming fundraising events.
Members can also benefit from subsidised rates for our annual meetings.
Find out more about ACT membership at annconroytrust.org/membership
#AnnConroyTrust #ChiariMalformation #Syringomyelia #ACTMembership
The Ann Conroy Trust Autumn Meeting is coming up! 💜
Join us on 26 September 2026 at Kettering Park Hotel & Spa for a day of networking, a guest speaker, a Q&A with expert panellists and the chance to connect with fellow attendees.
Lunch and refreshments are included, with places available on a first come, first served basis.
For more information or to book your place, email info@annconroytrust.org.
#AnnConroyTrust #ChiariMalformation #Syringomyelia #AutumnMeeting
Chiari Malformation Awareness Month 💜
September is Chiari Malformation Awareness Month. Chiari malformation is a condition where the lower part of the brain presses down into the spinal canal, and it can have a significant impact on daily life.
Throughout September, we’ll be sharing information about Chiari, symptoms, diagnosis and living with the condition.
Help us raise awareness and share our posts with others.
#ChiariAwareness #ChiariMalformation #Syringomyelia #AnnConroyTrust
Every donation, fundraiser and share helps us continue supporting people affected by Chiari Malformation, Syringomyelia and associated neurological conditions.
Whether you organise a fundraising event, make a donation through our JustGiving page or simply share our work with others, you`re helping us provide information, support and raise awareness of these rare conditions.
No contribution is too small. Together, we can make a real difference to individuals and families across the UK.
💜 Find out more about how you can support the Ann Conroy Trust by visiting our website.
#AnnConroyTrust #ChiariMalformation #Syringomyelia #SupportRareDisease
🎙️ Have you tuned in to the latest episode of It`s A Rare Thing?
In Season 2, Episode 1 – Where`s My Syrinx Gone?, Brad shares his personal journey of living with Chiari Malformation and Syringomyelia, from receiving his diagnosis to undergoing decompression surgery and the unexpected news that followed.
Through honest conversations and lived experiences, It`s A Rare Thing aims to raise awareness, provide reassurance and help people affected by these rare neurological conditions feel less alone.
Whether you`re living with Chiari Malformation or Syringomyelia yourself, supporting someone who is, or simply want to learn more, this episode offers valuable insight into life with these conditions.
🎧 Listen now via our website or YouTube.
#ItsARareThing #ChiariMalformation #Syringomyelia #AnnConroyTrust
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
