Doctor comforting woman

We are supported by medical professionals and all our advice is founded on the most recent evidence- based clinical research and current practices. We raise public and professional awareness and campaign for better prevention measures and standards of care within our health service.

We work with a number of medical professionals who have an interest in cCMV and we support much needed research in this field. We aim to publicise any new CMV research findings via our website and social network pages.

Woman and child in wheelchair

We offer advice, support and friendship to anyone affected by cCMV. 

We advocate for families affected by cCMV and support them in ensuring that they receive the best possible service from their healthcare, education and social work providers.

Scientists researching

Research is currently under way for a CMV vaccine and it is our hope that, one day, it will become widely available. As part of our campaign we continue to stress the need for a vaccine to health professionals and policymakers by highlighting the devastating impact of CMV.

Our History

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.

Our Achievements

CMV Action is a small but growing charity. The key people, the trustees and support volunteers, are a small group working hard to raise awareness, support families and work with medical professionals. Please help us where you can. We can do more with your support.


Just some of the things we achieved in 2021

Coronavirus continued to create many challenges for everyone but sadly cytomegalovirus has not gone away and we have worked hard to continue our work, just in slightly different ways.

Our Achievements in 2021

  • Supported over 250 families – through the website, phone calls, emails and social media
  • Reached over 50,000 web users
  • Social Media reach substantially increased with posts about screening reaching 20,000 people
  • New Instagram channel setup and growing fast
  • Worked with International groups to bring about change
  • In National Awareness Month we focused on a petition for screening but despite over 7,000 signatures which along with press coverage did much to raise awareness, it was disappointing not to reach the number required to persuade Government to consider this.
  • Our newsletter has over 1300 subscribers
  • We took part in the GAP Virtual Round Table Meeting
  • Enlisted three new Trustees
  • Alongside our Facebook Page we extended our Private Facebook Support Group, which now has over 280 members
  • We launched 2 new booklets CMV in Pregnancy and CMV in Babies & Children available as downloads & printed
  • We also developed a brand new resource for midwives providing them with a tear off pad to hand out at booking in appointments.
  • A new website was successfully launched making it easier to access information.
  • We continue to be supported by Professor Asma Khalil as a Medical Advisor. She is a Professor of Obstetrics and Maternal Fetal Medicine at St. George’s Hospital, University of London.
  • We continue to be supported by Dr Chrissie Jones, Associate Professor in Paediatric Infectious Diseases and Immunology at the University of Southampton within the Faculty of Medicine.
  • Held 40 Zoom meetings, with stakeholders, Trustees, etc.
  • Had support calls with our medical advisors to ensure we support families in the best possible way
  • Continued to be a member of the Northern Line – a group of medical professionals, with an expertise in CMV, who meet to discuss research opportunities and share information to improve practice. CMV Action provide the patient perspective in discussions and planning.
  • Supported students on their dissertations on CMV, sharing research and current evidence.
  • We continue to be supported by some wonderfully generous fundraisers although – this continued to be a difficult this year as there was a reluctance to return to in person sporting events.

Many thanks to all our fundraisers, those we know and those we don’t always know about, those who had a Facebook fundraiser for birthday or Christmas, those who donate as a one off or as a regular donation and those who shop through Smile Amazon; without you we could not continue.

To all of you – too many to mention. 

We are so grateful to you.

We continued to collaborate with other charities – Sands, NDCS, CICS, AVUK, Child Bereavement UK, BLISS, The Elizabeth Foundation, Pregnancy and Baby Charities Network. Supported World Prematurity Day, Remember a Charity, Baby Loss Awareness Week and other relevant days.

Right now we ..

  • Are translating our literature to reach those where language is a barrier.
  • Planning our strategy for the next 3 years.
  • Working towards lobbying MPs to get behind raising awareness about CMV.

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

Who we help

Pregnant Women

Pregnant Women

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Working with Small Children

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Health Professionals

Health Professionals

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