Spring Newsletter 2017


As we approach our 4th awareness month in June we would like to update you on what we have been up to, forthcoming events and the achievements of some of our fundraisers.

Conference Programme
CMV Action had an exhibition stand at the Maternity Midwifery and Baby (MMB) Forum held in London on 14th November.  Sharon Robinson, our Trustee and Sharon Wood, our Project Manager met with lots of midwives and students and discussed many aspects of CMV.  Literature and posters were very popular and taken back to workplaces to share with colleagues.  Sharon Wood gave a presentation entitled “CMV – A Bigger Threat Much Closer to Home” comparing the publicity and concern around the Zika virus to the lack of knowledge and awareness of CMV, which poses a much greater threat to pregnant women in the UK and Europe. 

CMV Action also had a stand at the MMB Forum in Bristol held in the Marriott City Centre Hotel on 5th April.  The event was free to midwives and students making it very popular giving the opportunity to engage and raise awareness amongst professionals from Bristol and the surrounding counties.

The other MMB Forums in 2017 which CMV Action will be attending are:
Birmingham – 30th June
Manchester - 26th September
Edinburgh – 28th November
Further details of all MMB events can be found at http://www.maternityandmidwifery.co.uk/

Canterbury Christchurch University Midwifery Society held their annual conference “Midwifery:  Art or Science” on Saturday 22nd April at the University’s Canterbury Campus.  CMV Action were invited to have a stand at the event.

A busy conference year for CMV Action will also see us exhibiting at the 2017 Primary Care/Public Health Conference at the NEC, Birmingham on Wednesday 17th and Thursday 18th May.  This conference is UK’s leading event for GPs, federations, CCGs, nurses, midwives, AHPs and managers working in primary, community, public, prison and global health. The event is free of charge to attend for all UK practising clinicians and healthcare managers.  Apart from the CMV Action stand (come along and see us on Stand F140) we will also be delivering a session on CMV during the conference.

On the 26th May, our chair Caroline Star will be taking part in a CMV session at the RCPCH Conference in Birmingham.  This is looking to be a very exciting session with Caroline giving the parents’ perspective of CMV, sharing the stage with Professor Paul Griffiths and Dr Simone Walter.

CMV Action will also be attending the RCM Annual Conference on 31st October and 1st November again.  Further details will appear in the next newsletter.

Article in the Midwifery Digest, March 2017
A paper “Congenital cytomegalovirus infection, knowledge and attitudes amongst maternal health professionals and pregnant women” has been published in MIDIRS’ Midwifery Digest.  The paper was based upon research funded by CMV Action and designed and carried out by CMV Action and St. George’s University London.  The article can be read at https://www.midirs.org/wp-content/uploads/2017/03/AN20170131-3.pdf

CMV Action Launches a Tender for Research - Estimating the Costs of CMV in the UK
CMV Action has launched a tender for a research project which is aimed at producing the first complete picture of the economic effects of CMV in the UK.  The results will provide an evidence base for further research, awareness raising, lobbying, campaigning and fundraising.  The work will involve collecting, collating and analysing data from a wide range of sources.  The project will be overseen by a small, expert Steering Group, including Professor Paul Griffiths, the UK’s leading authority on CMV vaccine research, Dr Chrissie Jones who is leading research to develop an effective antenatal education intervention in the UK and Professor Mark Suhrcke, economic advisor to CMV Action.
For any further information, please contact Sharon Wood sharonwood@cmvaction.org.uk
CMV ACTION DAY OUT- Saturday 17th June 11-3pm 
We hope you will join us for a special day out at Thames Valley Adventure playground in Taplow, near Maidenhead.  We have exclusive use of this fantastic venue on a 2.5 acre site.  The playground is suitable for children and young adults with all types of special needs and their siblings.  Facilities outside include a zip wire, tree top trail and a castle and inside a playroom, sensory room and soft play. We feel there is something for everyone whatever their age or needs and whatever the weather!  Families and friends are welcome but we will need to know numbers in advance.   We really hope you will be able to join us and meet some other CMV families.  The event is free to CMV families though a refundable deposit is required.  Please use this link to secure a booking CMV Action family day out. Our wonderful volunteers will be sorting out some afternoon treats for the kids. Please bring a picnic lunch and coins for the tea/coffee vending machine. 

We were sad to say good bye to our Trustee Sharon Robinson, but she is going to stay on as a Support Volunteer.   We are very pleased to welcome Rebecca Blinkhorn and Amy Taylor as new Trustees.  As well as being one of our support volunteers, Rebecca will be supporting all our fundraisers and helping to organize our awareness month in June, the family day out and teddy bears picnic events.  If you’d like to know more about the teddy bears picnic or have any other fundraising ideas or events, please contact her at fundraising@cmvaction.org.uk.  Amy will be helping with our communications and PR.
Fundraising for CMV Action
Thank you to all our amazing fundraisers - including
Jade Litten, friends and family for your 'Total Warrior' success.  Jade said,  "Last August myself, my husband, my dad, my step dad, my uncle and a few friends did Total Warrior to raise money and awareness for CMV Action. Having never done anything like this before I was extremely nervous but we did it and between us raised about £1800. The most important thing is that I made people aware of CMV!"  - What a fantastic achievement! Well done guys! 
Congratulations to Scott Garlick and his wife Emma.  Scott doubled his fundraising target, taking part in the Contender White Collar Boxing Match.  Inspired by his five month old son, Jack born with CMV  Scott said, "So I didn't get the win in the fight but the charity won on the night. Thanks to everyone's generosity we raised a total of £1072.50 for CMVAction and importantly raised awareness” Thanks so much to the Garlick Family, fantastic result! 
Carlie May Johnson hosted a Charity Event for CMV Action at their local pub, The Eagle, Galleywood. They did a buffet, disco and auction raising a grand total of £2,056.25. They have plans to do a similar event in future! Carlie's little boy, TJ was born with CMV. 
Thank you also to Megan who has CMV and voted for her school council to raise money for us, Anna Winfield who cut her hair – donating her hair to The Little Princess Trust and raised money for CMV Action, Sarah Hancock who ran the London Marathon for us, Russell Crowther – who did a Dry January, Adam Walsh is taking part in 5 different events this year – the first event is the Bristol Great run and then a further 4 events throughout the year and good luck to Team Didsbury – running the Manchester 10k on Sunday 28th May.
We hope we haven't forgotten anyone - there are now so many of you wonderful people raising much needed funds for us - but please know that we appreciate every penny and they will all be put to good use.  Thank you again!
Sporting Events - Places Available
We still have places available in various charity runs this year if you are interested in taking part. We have places for the Great Newham London Run which takes place on Sunday 2 July 2017. The Great Manchester Run on Sunday, 28th May 2017 and The Great South Run on Sunday, 22nd October 2017. Huge thanks to Matt Willey and his team, who have taken up the places on The Great North Run on Sunday, 10th September 2017. We are all wishing you lots of luck! 
If you are interested in running for us, please get in touch at fundraising@cmvaction.org.uk 
Thank you for your continued support over the last year.  Our support and information for families is always available on 0808 802 0030 or contact us on info@cmvaction.org.uk 

The CMV Action Trustees
Caroline, Jan, Tom, Liz, Sarah, Rebecca and Amy

Upcoming Events

Thames Valley Family Day Out: Saturday 17th June
book tickets here: CMV Action family day out

Conference Programme

Maternity Midwifery and Baby Forum 
Birmingham 30th June
Manchester 26th September
Edinburgh 28th November

2017 Primary Care / Public Health Conference at the NEC
Wednesday 17th and 18th May

RCPCH conference in Birmingham on 26th May

RCM Annual Conference: 31st October to 1st November in Manchester


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
We noticed Ruby wasn't responding to sound when she was about 18 months old. My GP said she was fine and said I was a worrying first time mum. Without the support of our GP, we paid... Read more

Latest Events

Reg. charity no: 1171773