CMV Action began life as the CMV Support Group, set up Stan and Fay Courtney, after the birth of their daughter, Sian, in 1980. When a local paediatrician suspected congenital CMV might be responsible for the seizures Sian was experiencing. Stan and Fay began to look for information and support, and found little was available.
Having contacted “In Touch”, an organisation aimed at matching up families with the same rare condition, Stan and Fay made contact with other families affected by CMV and the CMV Support Group was born, with Professor Paul Griffiths as its patron. As contacts from other families affected grew, it quickly became clear that CMV is not one condition but a wide spectrum from minor speech, hearing and mobility problems to major physical and learning impairment, as well as neonatal deaths and stillbirth. Demand for information and support continued to grow, and the group was renamed the Congenital CMV Association in 1986. At this stage, the group but had no constitution, no committee and was funded on a shoe-string.
In 2000, Stan and Fay handed over the running of the Association to Keri Barzotelli, followed by Carmen Burton. By 2011 it was decided that the responsibilities needed to be shared and the first Board of Trustees was elected. A new name was needed to reflect the new organisation’s aims and CMV Action was born. Registered charity status was achieved in 2012.
As the internet opened up many new channels of communication, CMV Action has grown into the vibrant organisation it is today. Our staff and Board of Trustees all work to limit the devastating impact of CMV for those currently affected and for future generations. We work with medical professionals and collaborate with colleagues in the UK and globally. We have an increasing influence in the world of congenital CMV and continue but continue to work on restricted funding, relying wholly on the generous donations received from our supporters, without whom we could not exist or continue.