About us

About the Charity


Support, Education & Research for those living with Syringomyelia (SM)  Chiari Malformation (CM) and Associated Conditions


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.


Today the charity is completely run by volunteers, including Consultant Neurosurgeons, Specialist nurses and patients living with the conditions. You can meet our Trustees here


The Charity is the only organisation in the UK providing educational material about Syringomyelia and Chiari Malformation.  It funds appropriate research work and provides a national helpline and support network which includes qualified support counsellors for those living with the conditions.

The charity also funds training days for neuro nurses, physiotherapists, occupational therapists and other interested medical professionals. Where possible The Ann Conroy Trust puts those living with the conditions in touch, so they may get together to support each other. Ann Conroy Trust supply educational material for these meetings.

Objectives of the Charity.

The objectives of the Ann Conroy Trust are straightforward. We wish to increase our knowledge and understanding of Syringomyelia Chiari Malformation and associated conditions. To provide support for patients their relatives and carers.

Included amongst carers are medical non-specialists including: GP's,  nurses, physiotherapists, occupational therapists or social workers. We provide educational material for all of these groups, in both written and electronic forms.


Ann Conroy Trust fund appropriate research projects.  We are the only  UK wide charity specifically supporting research into Syringomyelia and Chiari Malformation. This research will bring significant benefits to patients.

Raising funds to expand our research programmes is a top priority of the Trust.


Finally, we are creating links with related charities both in the UK and International and other neurological charities in the UK.

Why do we need another Neurological charity?

Syringomyelia and Chiari Malformation are uncommon conditions. As a result there is little support available for patients.

As relatively little is known about the conditions outside of those specialists in the field. Only a limited amount of research into Syringomyelia is carried out worldwide.