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.
Janet was diagnosed with Syringomyelia after years of pain and headaches with no clear cause.
Her symptoms affected her arms, hands, neck, and upper back. She also experienced numbness, fatigue, and changes to her vision. For a long time, answers were hard to find, but an MRI scan eventually showed fluid-filled cavities within her spinal cord.
Living with syringomyelia often means finding ways to adapt. Janet manages the ups and downs by pacing her activities, planning regular rest, and using mobility support when it helps. This approach allows her to protect her energy while continuing to enjoy the things that matter most to her.
By sharing her story, Janet hopes to raise awareness of Syringomyelia and help others feel less alone.
Click the link in our bio to read Janet’s story on our website.
#Syringomyelia #RareNeurologicalConditions #ChronicIllness #LivingWithDisability #HealthAwareness
Syringomyelia is a rare condition that affects the spinal cord 🔍🩺
It occurs when a fluid-filled cavity, known as a syrinx, forms within the spinal cord and disrupts the normal flow of signals between the brain and the body.
The spinal cord plays a vital role in controlling movement, sensation and many body functions. When its structure is altered these signals can be affected. As a result, some people may experience pain and loss of function (such as weakness or numbness) throughout their body. Certain reflexes, like sweating, can also be disrupted.
Because these symptoms can develop gradually and may overlap with those of other spinal conditions, it is important not to self-diagnose. We encourage anyone experiencing ongoing or unexplained symptoms to speak with a medical professional, who can carry out the right investigations and offer expert advice.
By raising awareness of Syringomyelia, we hope to help people recognise potential warning signs, seek timely medical support and feel less alone in their journey.
If you would learn more about this condition, click the link in bio to visit our website.
#Syringomyelia #Syrinx #ChiariMalformation #NeurologicalHealth #HindbrainHerni
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. 📞
Happy New Year from the Ann Conroy Trust 💜
As we say goodbye to 2025, we want to take a moment to reflect on what has been a meaningful year for our community.
Over the past year, we’ve continued to raise awareness of Chiari Malformation and Syringomyelia, sharing information, support, and lived experiences across our Facebook page and launching our new Instagram account to reach even more people affected by these conditions.
One of the real highlights of 2025 has been the success of the West Yorkshire support group. Watching people come together, share experiences, and build genuine connections has been a powerful reminder of how important community support can be.
None of this would be possible without the support of our followers, fundraisers, donors, volunteers, and everyone who engages with our work.
Thank you to everyone who has supported us along the way. We look forward to continuing our journey together in the year ahead.
#AnnConroyTrust #ChiariMalformationAwareness #Syringomyelia #SupportGroup
Merry Christmas 🎄
As the year wraps up, we just want to say a huge thank you to everyone who’s supported our charity this year. Whether you’ve fundraised, donated, shared our posts, or simply followed along and supported our work, it really does mean the world.
Wishing you a peaceful Christmas,
The Ann Conroy Trust Team
We’re proud to see the Ann Conroy Trust featured in a recent BBC News article highlighting the launch of a new Chiari support group in Yorkshire!
The group was set up by Julia Brannigan following her son Joe’s diagnosis. Speaking to the BBC, Julia shared how valuable it was to connect with others who understood the realities of living with a rare neurological condition, and how support groups can play a vital role in turning an isolating experience into a shared one.
With more meetings planned in the months ahead, the group will continue to build awareness, community, and support across the region.
🔗 Click the link in our bio to read the full BBC News article to learn more about the group and its impact.
#ChiariMalformation #Syringomyelia #SupportGroup #Leeds #ChronicIllnessCommunity #WestYorkshire
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
This time of year can be particularly challenging for individuals living with Chiari Malformation or Syringomyelia.
Extra social events, changes in routine, and increased sensory demands can make symptoms such as headaches, neck discomfort and fatigue harder to manage. It’s also understandable to feel worried about keeping up or meeting expectations this time of year.
If you’re finding the festive season a bit overwhelming, these pacing tips may help.
With some thoughtful planning, clear communication and a little extra self-care, you can take part in the festivities in a way that feels manageable for you 🎄♥️
And as always, if you notice any new or worsening symptoms, please seek advice from a qualified medical professional.
#ChristmasSelfCare #FestiveStress #ChiariMalformation #LivingWithChiari #Syringomyelia
We`d like to share the work of the @accesstoworkcollective, a growing community focused on making the Access to Work scheme easier to understand and more accessible for those who need it.
Access to Work is a UK Government scheme that supports disabled people and those with long-term health conditions to start and stay in work. It can fund practical support such as workplace adjustments, specialist equipment and travel support to help remove barriers at work.
We wanted to highlight this resource for our community, as it may be helpful for people living with Chiari Malformation, Syringomyelia, or associated conditions who are navigating employment alongside their health.
They are also hosting an End of Year Community Session next week, which may be of interest if you`d like to learn more about the scheme or connect with others.
🗓️ Thursday 18th December
⏰ 6 pm - 7 pm
📍 Online via Zoom
If you`d like to register, please head over to their Instagram page and click on the link in their bio to sign up.
#AccessToWork #AccessToWorkCollective
#ATWSupport #ChronicConditions #InclusiveEmployment
