CMV Action is the only charity in the UK providing support and information to families affected by congenital cytomegalovirus (CMV). Congenital CMV is the most common viral infection that can affect babies before birth, with potential long-term health impacts such as hearing loss, developmental delays and vision loss. It can also cause miscarriage and stillbirth.
As many as 1 in 200 newborn babies are born with congenital CMV. The majority of these will not have any symptoms. However, around 1 in 1,000 born in the UK every year will have permanent disabilities as a result of congenital CMV – around 900 children every year. As congenital CMV is a relatively unknown condition, it is a common misconception that it is rare. It is in fact more common than Down’s syndrome, Toxoplasmosis, Spina Bifida or Cystic Fibrosis.
Despite the prevalence and potential severity of congenital CMV, awareness and knowledge are alarmingly low among healthcare professionals, parents and the general public. One of our key roles, therefore, is to develop and deliver resources and training for healthcare professionals, run public awareness campaigns, and collaborate with researchers and policy makers to improve outcomes for those affected by congenital CMV.
CMV Action was registered as a charity in 2012 and became a CIO in 2018. It is the only UK charity offering advice and support to families affected by congenital CMV. It is run by trustees, a part-time consultant operations manager (0.6FTE), a part-time consultant fundraiser (0.4FTE), a part-time consultant book-keeper (0.1 FTE), a volunteer IT consultant, and a support team run by volunteers with lived experience.
We are a fully remote team, and the majority of our work takes place online with our beneficiaries and stakeholders in the UK. We run an online community support group for families on Facebook and 482 of our members are based in the UK. We also provide a telephone helpline and email support to families and healthcare professionals in the UK. We offer these services, using our network of medical advisers, who are all experts in the field of CMV, leading research and supporting the medical needs of families affected by the virus.
The charity relies heavily on community fundraising and donations, which has steadily reduced over the last four years. This decline can be attributed to a number of factors including the rising cost of living, economic uncertainty, and the lingering effects of the COVID-19 pandemic.
For any further information on CMV Action, visit www.cmvaction.org.uk
