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CMV Action Newsletter Summer 2022
Help us Raise Awareness, Help us Change Lives 


This is an annual platform for giving, set up by all the businesses that make up the Benefact Group.  It’s quick and easy to nominate us and the more nominations we get the bigger our chance of winning £1,000 in the September and December draws. 

Just visit  and click ‘nominate a charity now’.  Please spread the word to all your friends and family too.

Thank you for helping!

CMV 2022

The 8th International Congenital CMV Conference & 18th International CMV Workshop, which was due to be hosted in Cambridge this year, took place virtually from 28th March – 1st April due to Covid restrictions.  However, CMV Action were delighted to take part in a fascinating two-hour session on Zoom specifically aimed at the general public on the afternoon of Sunday 27th March.  The session, well attended by parents and interested professionals, featured updates on the aspects of CMV that everyone wanted to know about. Presentations from experts in the field, including CMV Action, were followed by a panel discussion where speakers answered questions from the audience.


National Awareness Month took place in June kicking off a CMV Action campaign to raise awareness of CMV amongst women working in childcare settings, as well as women with young children attending nurseries, creches etc.   Although a leaflet outlining risk reduction in these settings has been delayed, it is intended that this will be launched shortly and work will commence to approach and discuss with childcare agencies in the UK.

NAM saw plenty of social media posting, and many members told their stories on our website.  We also achieved two articles in the professional press – one in “Midwifery Matters” and the other in the British Journal of Midwifery.


CMV Action are delighted that this year has seen a welcome return to face-to-face conferences. In May, we exhibited at the Primary Care & Public Health event at the NEC in Birmingham. We reached nearly 5,000 people where our newly launched tear-off pads for health professionals were particularly well received.  Lots of conversations took place with midwives, GPs and other health workers, all of whom said the CMV information they took away would be useful and influence their practice.

Sharon Wood, our Project Manager, and Angela Andrews, Midwife and CMV Trustee at the PCPH Conference

Our next conference will be the Royal College of Midwives’ Annual Conference which will be held in Newport in October.  We will have an exhibition stand, so if you are there, do come along and see us!


Sarah Dewar, our Chair of Trustees, recently attended a joint All Party Parliamentary Group on Midwifery and  Bably loss meeting where Donna Ockenden spoke about the findings, conclusions and essential actions from the independent review of maternity services at the Shrewsbury and Telford Hospital NHS Trust.  Several other speakers including midwives and parents shared their experience of baby loss and support in this very moving session.  Lessons learned will help us in our support role and collaborative opportunities will be explored going forward.

We are delighted to announce the appointment of three new Trustees to our Board.  We have been joined by:

Alice Fletcher Etherington:  Alice has recently completed a PhD in the molecular biology of CMV from the University of Cambridge, and has been looking for ways to stay connected with the CMV community and to utilise her knowledge of CMV to raise public and political awareness. Alice is passionate about the application of scientific research to improve health and promote equality and we are delighted to welcome her to the CMV Action Team.

Lucy Kelly:  Lucy is a mum of two and following a difficult first birth due to Group B Strep, Lucy became passionate about the importance of parental education.  Lucy became aware of CMV when she took part in the CMV RACE-FIT trial.  With her diverse professional experience, including a female health tech business, Lucy will be a positive and welcome addition to the Board.

Graham Jones:  Graham, a retired lawyer, has a personal interest in CMV as his granddaughter has developed profound deafness due to the virus. Graham and his family were shocked by the lack of information given to expectant parents about CMV and the amount of persistence required to obtain a diagnosis and treatment. We are delighted to welcome Graham as a new CMV Action Trustee.

Some of the team at our recent Trustee meeting in London


We are delighted to welcome Lucy as a support volunteer. Her daughter has been severely affected by the virus and the family have been very supportive of the charity for many years.  Lucy’s experience will be invaluable to parents and the support volunteers. 


We are hugely excited to bring you the news that the new NICE guidelines for Antenatal Care now recommend that women should be told about CMV. Click here for the fully updated guidance.

It is a huge step forward towards eradicating CMV to learn that all health professionals are now recommended to inform women at the first antenatal appointment about CMV.

This is what the new guidelines say:

“Information about antenatal care

1.3.8. At the first antenatal (booking) appointment (and later if appropriate), discuss and give information on:

…..infections that can impact on the baby in pregnancy or during birth (such as group B streptococcus, herpes simplex and cytomegalovirus)

The recommendation also encourages health professionals to discuss and give information on behaviour which will reduce the risk of CMV.

1.3.8. At the first antenatal (booking) appointment (and later if appropriate), discuss and give information on: “reducing the risk of infections, for example, encouraging hand washing”

Furthermore, it is advised that when a pregnant woman is booked in her occupation is discussed which should hopefully flag up those who work in childcare or other occupations with babies and young children and who may therefore be more at risk of catching CMV:

“Taking and recording the woman’s history
1.2.1 At the first antenatal (booking) appointment, 
ask the woman about:…. her occupation, discussing any risks and concerns“.

Many of you will know that our previous chair Caroline Star, served on the antenatal care guidelines group for over 3 years and it is testament to her work that CMV has now been included.  We offer a huge thank you to Caroline for her hard work on this committee and a great achievement. 


We would like to thank all our fabulous fundraisers for their tireless efforts in raising money so that we can continue to support pregnant women and parents and work to raise awareness of CMV.  Thanks to everyone for your continuing support.  Don’t forget to follow us on social media:


We are still here for you when you need us – call us on freephone 0808 802 0030 or email We will return all calls so please leave a message if we do not answer. 

We wish all our readers a very happy summer.

The Trustees and Sharon and Sue at CMV Action

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