CMV Action newsletter Jan 2016

Our Trustees

Dear supporters,

 We would like to take this opportunity to wish you a happy New Year and to update you on what CMV Action has been up to towards the end of 2015.

Research and Policy

We’ve spent the past few months getting out and about talking about CMV.  We had a stand at the Royal College of Midwives conference for the first time and we’ll be presenting at another big midwifery conference in February (Maternity, Midwifery and Baby).

We’re working alongside a coalition of organisations and MPs promoting simple hygiene precautions for infection control.  We attended the launch of the Handz campaign in parliament and are closely following the work of the All Party Parliamentary Group on patient safety.  You can write to your MP and ask them to get involved.

We've had some great meetings with the Chief Medical Officers' teams in Wales and Scotland about promoting CMV awareness.  We’re also collaborating with CMV campaigners in Ireland who are pushing for more awareness.

In research news, all 7 recruiting centres are now open for the trial of oral antivirals for children diagnosed with congenital CMV up to the age of 4.  Within this age group, the study is targeted at children with mild-severe hearing loss who meet safety criteria. The UK aims to recruit 9 children per year for three years.  If you are interested in finding out more please contact us or your paediatric infectious disease specialist.  We can put you in touch with your local recruiting centre.

We'll be attending and showing our work at the European CMV conference in Venice 24-26 April 2016.  Parents are very welcome and can register for free tickets.  The organisers are very keen for some parents to come and share their stories.  It would be great to see some of you there.


The past financial year to 31 January 2015 was a very successful year for the Charity in terms of net income. This was due to the level of donations and income from fundraising events, including the inaugural CMV Action Charity Ball, sponsored events and income from the sale of merchandise. We'd like to say a huge thank you to all our wonderful fundraisers!  Full details are available in our Annual Report.

The Trustees are fully aware that we now have a responsibility to apply our reserves to further the objectives of the charity.  We have lots of ideas for exciting awareness and research projects for 2016 and have agreed an action plan and budget for the next three years.  This will see the Trustees apply some of the reserves to further the Charity’s objectives whilst also continuing to establish reserves to mitigate risk and to fund innovation and future developments.  Come to our Annual General Meeting in April to find out more.

CMV Action Trustees and Staff

CMV Action is a growing team, which lets us do so much more to raise awareness.  Welcome to Sarah Dewar and Sharon Robinson who joined us last year as Trustees.  Sarah is a mum to a 17 year old with CMV and has been a parent supporter for 4 years.  Sharon is a midwife in Buckinghamshire.  Amongst other things both are joining the support volunteers, taking calls and emails. You can read their 'CMV stories' on our website.

Sharon Wood also joins us at a very busy time as Project Manager.  She has vast experience working with charities and is leading on several projects in 2016.

Alongside Sharon Wood, is Jo Parsons, our new Grant Development Officer. Jo will help us to develop our fundraising activities, especially in relation to grant and trust funding applications.

And finally, congratulations to Kat Foster, as she commences maternity leave following the birth of her daughter Willow.

Awareness Raising

We were lucky to attend the annual 2 day Royal College of Midwives annual conference in Telford in November.  Our stand attracted lots of interested midwives and students.  We were kept very busy giving out leaflets, talking about CMV, issuing freebies and hearing people’s stories and understanding their knowledge base.

Most people told us they had 'heard of CMV' but didn't 'know what it was.'  So, we are hoping midwives have gone away much better informed and will educate their colleagues and raise awareness!

We also got the opportunity to network with many other charities, businesses and key speakers.

Thank you to anyone who visited us and supported us.

We hope to be back in 2016, bigger and better!

Future Fundraising Events

We have places in the following sporting events this year - let us know if you'd like to join Team CMV Action: - contact

Great Manchester Cycle - Sunday 22nd May

Prudential RideLondon - Surrey 100 - Sunday 31st July

Great North Run - Sunday 11th September

Great South Run - Sunday 23rd October


Thank you for your continued support over the last year.  Our support for families is always available on 0808 802 0030 or contact us on


Our Stories

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
March 1999 Hi, I am Alicia Parks, I am very happy. Despite all my problems, I am very socially aware, alert young lady, and very mischievous. My mum and dad are Mandy & Neil. (I... Read more

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