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CMV Action AGM on 26th April in London, all members welcome 
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CMV Action Newsletter Spring 2014
CMV Action Update
What we’ve planned for the year
 
Trustees have now signed off our plan for 2014 (http://cmvaction.org.uk/cmv-action-2014-objectives-and-annual-plan/).  The plan is ambitious and got us all very excited (though also slightly scared about what will happen to our ever diminishing ‘free time’…).
 
Support is the bedrock of what we do at CMV Action. We are firmly committed to developing this over the year.  We already know that families really value a listening ear and information they can trust when their child is newly diagnosed.  But we want to do more to help our members after that point of first diagnosis.  We will therefore be running projects to improve the support and information we can offer those with older children. Following the positive feedback from our first family party last year, we will also be running another family event in September.
 
One of the highlights of the plan is the decision to run our first UK awareness month in June.  In the lead up to the month, we’re going to run some survey work in partnership with researchers at St Georges, University of London. This will assess knowledge and attitudes amongst pregnant women and the professionals that work with them.  We will then be doing national level PR at the start of June to try and get important prevention messages to pregnant women.  We also want to help all our supporters to raise awareness in their local communities during June.  So drop us a line and let us know what would help you to make a splash.
 
For the first time, we have set ourselves an explicit objective on supporting the development and implementation of research on CMV.  We very much want to see important exploratory research on screening in pregnancy funded.  We also want to see any child that doesn't pass their newborn hearing test being given a test for CMV.  We will be supporting research bids on both these areas in 2014.
 
Our Annual General Meeting to be held in London on 26th April will include brainstorms and discussions on many elements of the plan.  We hope to see some of our members there – please email our secretary Jan Pearman at jan@cmvaction.org.uk if you would like to attend.
 
What we didn’t plan for the year
 
Well we always said it would be great to get a story about CMV in the mainstream press.  We just didn’t expect it to crop up the way it did at the end of January!  Many of you will have seen the very sad tabloid stories http://www.dailymail.co.uk/health/article-2549596/The-boy-near-pregnant-women-Teenager-contagious-virus-cause-disabilities-unborn-babies.html about a teenage boy who was forced to attend an all boys school because he is known to carry CMV.    Some of the stories unhelpfully implied that he is a ‘danger to women’. We quickly put out our response http://cmvaction.org.uk/inaccurate-and-misleading-daily-mail-story-about-cmv/ stating there is no justification at all for this treatment.  We’d like to say a big thank you to everybody who posted on websites and Facebook pages and even approached their local newspapers to set the record straight. In the meantime we’re still working hard to use this opportunity to engage with newspapers, journalists, bloggers and social influencers, asking them to run a story with more constructive advice to pregnant women about how to manage risks of CMV. 
 
We would like to stress again that no child should be excluded from education or health services because they are known to carry CMV.  If you ever experience this kind of prejudice we are more than happy to help.  There have been a couple of occasions now where we have advocated on behalf of a family in a firm but non-confrontational way.  We’re pleased to say that on both occasions the organisation in question has backed down when faced with the facts.  Those of us with children affected by CMV have enough to deal with as it is.  No family should face prejudice and exclusion as well.  Please contact us at info@cmvaction.org.uk if you would like to discuss how advocacy could help your family.
 
Fundraising update
 
Charity Ball, 8th March 2014 at the Radisson Blu Edwardian Heathrow
Just 2 tables left for this year's major fundraising event.
Tickets include fine wine, fabulous food, music & entertainment throughout the evening including the Shadows wonderful keyboard player, Cliff Hall, entertaining us through welcome drinks and the fabulous soul band, Frank the Cat, providing the tunes into the small hours.  We have Bobby Davro as our celebrity auctioneer and some dance stars of the future plus plenty more besides.  Watch out on Facebook for updates and, if you don't want to miss out, contact sarah@cmvaction.org.uk for tickets now!
 
Secure your spot on a major sporting event
We have guaranteed spaces in a number of sporting events this year, and would love to hear from you if you'd like to get involved.
We can offer running, cycling and swimming as follows - Prudential Ride London-Surrey100 in August, BUPA Great London Swim also in August and BUPA Great South Run in October, so contact sarah@cmvaction.org.uk to find out the details.
 
Fun and Easy Online Fundraising - are you looking to make your fundraising for CMV Action, easy and fun? Need some new ideas to raise money? Tired of asking friends to sponsor you?  Guess2Give may be the answer… easy, fast and fun. Your friends will love the challenge of guessing in a sweepstake, the banter around your challenge and the chance to WIN!  Guess2Give can help you turn anything into a fundraiser for us. It’s FREE to set up and only takes a couple of minutes!  Check out the CMV Action page at http://www.guess2give.com/cmv-action/
 
Our latest band of fabulous fundraisers includes:
- Lindsey Cooper, who is organising a family fun day on Easter Monday and a charity ball later in the year in the Manchester area - she has also sold nearly 100 wristbands and has asked for more stock!
- Lindsey's sister, Jenny Cooper has a collection box and leaflets on her family bookstall in Bury.
- Stephanie Wrigley, Lindsey's boss, has a collection box in her hair salon and wants to do other things to raise money.
- David Lyon, another friend of the Cooper family would like a collection box and is selling CMV Action branded cakes - it all helps to raise awareness!
- Rob Wasteney, who is organising a charity auction.
- Becky Cheshire and her family, who are doing a 10k run.
- Emma Macfarlane who, having had to delay her trip, will be making it up Kilimanjaro this June.
- The Chapel Royal in Brighton who host weekly coffee mornings and will be raising awareness and collecting for us in April.
- Barry and the Hailsham Rotary Club who are holding a Golf Day on 11th July and Greg Funnell who is running up Mont Blanc.

Thank you to all those who are fundraising and helping us raise awareness and support our members.

 

Upcoming Events

8 March
CMV Action Ball

26 April 
CMV Action AGM

June 2014
CMV Awareness Month

 
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