Spring 2015

     

Plans for 2015 - Trustees have been busy planning how we can best achieve CMV Action’s objectives in 2015.  

 

There are some exciting things in the pipeline  

Support

At the end of last year we asked how we could improve our support.  The votes are now in! 
The most popular option was to ‘provide an opportunity to put questions to a CMV expert with answers published in the newsletter’.  The runner up was ‘Provide more support and signposting for practical issues e.g. benefits, grants and equipment’.  Our wonderful team of support volunteers are now planning how to take these ideas forward.  You’ll have an opportunity to send your questions to a CMV expert very soon!
 
We have also have two exciting events for families lined up this year.  Our family party will be held in Manchester.  Date and location will be announced soon. We’re also holding our first CMV information day in partnership with the Elizabeth Foundation in Portsmouth.  This will be on Tuesday 2nd June.  Both events are free of charge to CMV families. 
You can book tickets for the information day here.

Research

We work very closely with CMV researchers in the UK.  This year we will be working with the Paediatric Infectious Diseases Unit at St George’s University of London on two bids. 
The first is a feasibility study of a CMV education programme for pregnant women.  The second is an implementation study looking at CMV testing for babies who fail their newborn hearing screening.  The bids will be submitted to the National Institute for Health Research in May and we hope to find out by the end of the year.  These are research gaps that desperately need to be filled in the UK so we will be working very hard to put in the best possible proposals.
 
Two very exciting research projects are kicking off in the UK.  Researchers in Wales have been awarded a grant to develop a new low-cost and easy to use device to diagnose CMV.   

A trial of oral antiviral treatment for children diagnosed with CMV up to the age of 4 will start recruiting shortly (contact us for more info on eligibility). 
CMV Action will be actively supporting both projects.  

Awareness

We have decided to focus our 2015 awareness efforts on health professionals.  Women want to get information about CMV from their midwife and doctor. Yet many professionals feel that they need more training and information on CMV themselves.   So we are going to develop training materials for health professionals over the course of the year. 
 
We also want to build a wider network of professionals who support our calls for more action to tackle CMV.  This is where we need your help.   Do you have a midwife, GP, obstetrician or paediatrician who has gone the extra mile to help you?  Contact us with your stories about CMV heroes and lets show that it can be done!
 
We’re delighted that CMV non-profit organisations round the world are now working together more closely.  Together we can have so much more impact on CMV awareness.  The collaboration was launched with the silver ribbon campaign.  We’re sure this is just the start of an amazing partnership.

 
Fundraising

 

Our 2014 CMV awareness campaigns and materials were only possible because of our wonderful fundraisers.  We salute each and every one of you.    
Because we want to expand into professional training, going forward we will need to increase our fundraising ambition.  There are a lot of midwives out there and study days are not cheap!  So in 2015 we plan to recruit a Grant Development Manager.  This is a new direction for CMV Action but we feel it is a necessary one to increase our impact.
 
Please don’t think that we don’t need your fundraising support anymore.  Important services like our website, our input to research and our public awareness campaigning are harder to get grant funding for. And we still need to keep these going strong.

Desperately seeking sports heroes!

We have filled our 5 places on the Great North Run.  We even have an extra couple of runners who applied in the ballot and are raising money for us, which really IS Great!But, we still need people for the Great South Run in October and cyclists who are up for the 100 mile challenge of the Prudential RideLondon on 2nd August. We have bought the places so would really like to see them filled as it's a great awareness raising opportunity too. If you fancy being on Team CMV Action, or know someone who would, please contact sarah@cmvaction.org.uk

Save the Month!  Family Party...

We wanted to give you some notice about this year's family get-together.  We have a lovely team of supporters in the Manchester area, who are currently looking at suitable locations - we've done Derby and made it to Milton Keynes, so this year we're meeting in/around Manchester.  

More details to follow shortly including the exact date but please bear it in mind as it will be one sunny (hopefully!) Sunday in June, which also happens to be CMV Awareness month.
 
All in all 2015 is set to be another busy year for CMV awareness.    

Looking to the future and working together we can make real and lasting change in the fight against CMV.

The CMV Action Trustees
Caroline, Jan, Kat, Liz, Tom, Sarah

     

Our Stories

Everything had been going fine with my pregnancy until the 18-week scan. Then I was told I had my dates wrong and they put me back by 5 weeks, originally it was August 15th, now it was... Read more
Four weeks before the due date of our second child, Mylo, a breech scan showed he had excessive fluid on his brain and his weight had dropped dramatically from previous growth... Read more

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