Just some of the things we achieved in 2018

  • Supported over 500 families – through the website, phone calls, emails and social media.
  • Had nearly 20K website visits
  • Connected with over 9000 midwives and medical professionals by attending and presenting at – 

Feb  - NHS training at Northwick Park, Harrow

April – John Moores Liverpool University - 1st year midwifery students

May  - Canterbury Christchurch University – midwifery conference

May   - Keele University Many Voices Day – medical professionals

May   - Primary Care Public Health Conference, Birmingham NEC

May   - University of West London Midwifery Conference

Nov  - Teeside University 1st year midwifery students

Nov – RCM Conference, West Midlands

Nov – An update on Infections in Pregnancy, Royal College of Gynaecologists and Obstetricians,

Nov – Infectious Diseases in Pregnancy Day – London Northwest University Healthcare Trust

  • Commissioned YHEC to research and report on Counting the Cost of CMV
  • Conducted a parents survey for the report
  • Research article published in the British Medical Journal (BMJ) ‘Economic cost of congenital CMV in the UK’
  • Collaborated on a survey to gain information in support of a request to Public Health England to maintain newborn blood spot cards and not to destroy after 5 years
  • Educated 150 midwives via our ilearning programme
  • Featured in national articles including Daily Mail, Evening Standard and BBC London
  • Sent our 64 awareness raising packs to be placed in doctor’s surgeries, hospitals, etc
  • Collaborated with over 30 countries
  • Supported researcher’s bids for funding
  • Supported Research programmes and surveys including trials for anti virals for children up to 4 years
  • Supported sporting fundraising events including Boxted Run, Swindon 5K, Leeds 10K, Skydiving, Great North Run, Manchester 10K, Spartan Race and the Philadelphia Marathon
  • Supported Fundraising Evenings, Charity Ball, Nursery wear pink/blue day, Golf Captain’s Day
  • Collaborated with other charities - Sands, NDCS, CICS, AVUK, Child Bereavement UK, BLISS, The Elizabeth Foundation
  • Held 4 face to face Trustee meetings and many conference calls
  • Had support calls with our medical advisors to ensure we support families in the best possible way. 

Thank you to everyone who has made this happen – together we can bring about change.

And how we got this far – the History of CMV Action

Way back in 1980, Stan and Fay Courtney’s daughter, Sian, was born severely disabled due to congenital CMV. They found that there was very little information or support available. Keen to get in touch with other families in a similar situation they established the UK CMV Association in 1986.

As it grew, Keri Barzotelli, and then Carmen Burton, took over the Association. Both Keri and Carmen had children affected by cCMV. Carmen ran the group for many years.

That early start was invaluable but in 2011 it was decided that the responsibilities needed to be shared and so our first Board of Trustees was elected.

A new name was needed to reflect the charity and its aims and so ‘CMV Action’ was born.

With a lot of hard work and fundraising, we achieved registered charity status in 2012.

Since then there have been a few changes to the Board of Trustees, we have a new website, increasing membership and media interest, and a renewed sense of purpose. We are going from strength to strength.




Our Stories

July 2013 My son was born at 12.18am on the 28th July 2013 after what I thought had been a normal pregnancy. I got to Ipswich Hospital where I was preparing to give birth at around 11pm... Read more
April 2011 Lydia is one of non-identical twins, born on 6th April 2011 at 38 weeks in Welwyn Garden City with her brother Isaac.   Lydia was very small at 1.8kg (3lb15oz) so she... Read more

Registered charity no: 1171773