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 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 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. See also hydromyelia. 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. 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., 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.
The side of Chiari that you don`t always see.
Chiari malformation can affect much more than headaches and neck pain. Symptoms can vary from person to person and may include dizziness, balance problems, brain fog, fatigue, tinnitus, numbness, tingling, visual changes, memory difficulties and problems with sleep.
For many people, these symptoms can have a real impact on everyday life, even when there is nothing visible to show how they are feeling.
#ChiariMalformation #ChiariAwareness #InvisibleIllness #AnnConroyTrust
Sometimes, “How are you?” can feel like a really difficult question to answer, especially when you`re living with pain or managing a health condition.
A simple, more specific question can make it easier to talk about how someone is really doing. Asking what they’re looking forward to, what their pain is like today, or whether they need some help or space can open up a much more useful conversation.
Sometimes it’s the little questions that make it easier to say what we need.
#PainAwarenessMonth #ChronicPain #InvisibleIllness #AnnConroyTrust
Living with ongoing pain can affect so much of everyday life, and it can be difficult when that pain isn`t always visible to others.
For Pain Awareness Month, we`re reminding people that pain is real, even when you can`t see it. Listening, understanding and offering support can make a real difference to someone living with pain.
You don`t have to look unwell to be struggling.
#PainAwarenessMonth #ChronicPain #InvisibleIllness #AnnConroyTrust
What are the symptoms of Chiari malformation?
Chiari can affect people in different ways, and symptoms can vary from person to person. Some may be mild, while others can have a significant impact on everyday life.
Symptoms can include headaches, neck pain or stiffness, problems with balance and coordination, changes to vision, sensitivity to light, tinnitus and difficulties swallowing.
Some people experience intense headaches after coughing, sneezing, straining, bending over or even laughing.
If you’re living with Chiari and want to know more about the condition or how we can support you, visit our website.
#ChiariMalformation #ChiariAwareness #NeurologicalConditions #AnnConroyTrust
A new episode of It’s a Rare Thing! 🎙️
This week, we’re sharing A Story of Hope.
Hope is an 18-year-old Black Belt Jiu-Jitsu holder living with Syringomyelia. Despite her condition, she refuses to let it diminish her ambitions in contact sport.
In this episode, Hope shares her story and what it means to keep doing what she loves while living with Syringomyelia.
🎧 Listen on Spotify:
https://open.spotify.com/show/033Gd9LljUUxScsxscApqn
#ItsARareThing #Syringomyelia #ChiariMalformation #ChiariAwareness #RareDisease #JiuJitsu #BlackBelt
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
