Kirsten Johnson, Lib Dem PPC for North Devon, has become Chair of a national charity, The Fragile X Society.
Fragile X Syndrome is the most common known inherited cause of learning disabilities, affecting around 1 in 4000 males and 1 in 8000 females. It can cause a wide range of difficulties with learning, as well as social, language, attentional, emotional, behavioural and medical problems. In addition, approximately 1 in 250 females and 1 in 600 males are carriers of the Fragile X pre-mutation. Some carriers may develop symptoms of one of the two Fragile X-associated Disorders. Therefore, Fragile X consists of a family of three genetic conditions.
One of the aims of the Fragile X Society is to provide support to families affected by Fragile X, through providing information about the conditions. They have a broad range of information available, and also advise professionals who work with those affected.
On becoming the new Chair, Kirsten says, “As a member of this life-changing organisation, I will use my personal knowledge and campaign vigour to support the work of the society. Fragile X is a condition that affects families across the UK. Tragically, many carriers of the Fragile X mutation and those who have associated conditions, do not get the help and support they need. This needs to change and I intend to see that it does”.
Learn more about the The Fragile X Society