Our Achievements - 2016


Just some of the things we achieved in 2016 

  • Supported 562 families – through phone calls, emails and social media
  • Connected with 5000 midwives and medical professionals by attending and presenting at - 
  • The Legal Birth Conference, Royal College of Physicians, London
  • Royal  College of Midwives Conference in Harrogate
  • Perinatal Research and Education Meeting, Manchester
  • Arrowe Park Hospital, the Wirral
  • European Congenital CMV Initiative in Venice
  • Maternity Midwifery and Baby Event in Birmingham
  • Maternity Midwifery and Baby in London
  • Christ Church Student Union Midwifery Society Birth Choices
  • Primary Care Public Health Conference- NEC Birmingham
  • 6th International congenital CMV Conference 2017 in Noordwijkerhout, Holland
  • CMV Study Day on March to trainees midwives at Canterbuty Christchurch University
  • Educated 700 midwives via our ilearning programme
  • Organised a  Support Volunteers Training Day in London
  • Collaborated with over 30 countries
  • Featured in more than 10 national articles
  • Supported researcher’s bids for £1.2 million funding
  • Liaised with universities running Teacher of the Deaf Courses to raise the profile of deafness caused by CMV
  • In CMV Awareness month, we held a Family Party in Manchester
  • CMV talk as part of Complex Needs Week at the Ear Foundation, Nottingham June
  • Supported fundraising events including Great South Run, Great North Run, Prudential Ride London, Marathons, Colour me runs, 10K runs, Screen your Story, local coffee mornings/fetes/school events and so much more.
  • Distributed literature to hospitals, doctor’s surgeries, midwives, teachers
  • Supported Research programmes and surveys

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

Hi my name is Suzanne, I'm a mum to an only child.. Ethan Isaiah. Ethan was born in May 2011, 4 weeks before his due date. I'd had a perfect pregnancy up until a scan at 34 weeks which... Read more
June 2014 I found out I had CMV in pregnancy and thought I would share my experience in the hope that it might help (sorry if this is a bit lengthy!) All had been well at my 12 week... Read more

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Reg. charity no: 1171773