The Ann Conroy Trust is the UK’s only educational organisation

For those living with Chiari Malformation, Syringomyelia, and associated conditions

Graham Flint

A message from the chairman

"A warm welcome, from the Ann Conroy Trust"

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.

Our Purpose

To increase knowledge and understanding of Syringomyelia & Chiari Malformation and associated conditions, and to provide support for patients, relatives, and carers.

A small charity, with a big heart

The Ann Conroy Trust (ACT) was established in 1980 by Ann Conroy. As a Syringomyelia patient herself, Ann realised others living with the conditions and their carers needed support. Raising funds to enable research into the condition of Syringomyelia 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 Syringomyelia and Chiari Malformation.

Latest news

We like to keep you up to date on news & developments as soon as we can. Here’s a few of our latest posts.

News & Notices

Autumn Meeting 2022

The Charity is pleased to announce the resumption, post-COVID, of its annual meetings, for patients, families and friends. To get involved, click here.

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News & Notices

Lynn Burton, Chairman

It is with great sadness that we announce the death of our chairman, Lynn Burton. Lynn passed-away peacefully, in the early hours of Sunday 3rd

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News & Notices

COVID-19

If you are concerned about the effects of the coronavirus in relation to your own medical condition, then please consult your own hospital specialist. Please

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