The Ann Conroy Trust has been featured in a recent BBC News article highlighting the launch of a new support group for people affected by 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. in Yorkshire.

The group was set up by Julia Brannigan after her son Joe was diagnosed earlier this year. Supported by the Ann Conroy Trust, the group aims to help individuals and families feel less isolated, raise awareness of 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 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 provide a space where people feel understood and connected.

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.

The group first met in Leeds in November, with further meetings planned in the coming months.