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CMV Action Newsletter June 2016
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CMV ACTION NEWSLETTER JUNE 2016
ECCI Conference
 
Sharon Wood, our Project Manager, attended the ECCI Conference on the island of San Servolo, in the beautiful city of Venice last week.  Apart from the wonderful venue, this meeting gave CMV Action an excellent opportunity to meet and speak with a variety of leading specialists and researchers in the field from around the world, and to take part in special sessions for families as well as a round table discussion on opportunities for collaboration.

Whilst attendance by families and patient groups from Europe and beyond was sparse, Sharon was able to suggest that the cost of attendance, as well as the difficulties faced by parents caring for a child affected by CMV, were probably the main reasons for the poor take-up and as the medics agreed that their perspective at these events was very valuable, that a bursary or other assisting measure to encourage future attendance would be useful.  CMV Action was able to represent youngsters in the UK with a slide show of their experiences of CMV and their positive outlook and achievements in life.  Thanks to all those who took part and told their stories - this was much appreciated by the medics making up the large proportion of the audience.

Sharon was also able to address the conference with a presentation reporting back on the survey conducted by St. George’s University, London and CMV Action on CMV Knowledge and Attitudes Amongst Professionals Working in Ante-natal care in the UK.  The survey results highlighted the clear gap between professional willingness to discuss CMV risk reduction and the knowledge they need to do so effectively.  Having presented the key findings (also detailed on a poster displayed during breaks), Sharon went on to describe the programme of work and the strategy CMV Action are developing to address some of the problems emphasised by the survey.  This prompted many conversations during coffee and lunch breaks – especially from countries who had no experience of charities or where no charities exist and who wanted a CMV Action there! 

Overall, it was an excellent conference and although some of the presentations were extremely scientific, it proved what fantastic work is going on around the world to combat CMV. 
The conference ended with an agreement to work collaboratively to look at European funding for research and CMV Action agreed to be a partner to this and a conduit to parents and families affected by the condition.
Addio bella Venezia!
 

Support

We are very proud of the support we offer those who contact CMVAction. This includes calls and emails from pregnant women, families with a child diagnosed with CMV and those working with children affected. On 21st April we arranged training for our support volunteers which was given by the Helplines Partnership. As we all live in different places this was a rare opportunity for our volunteers to meet and discuss how best to offer support. We were joined by our new support volunteer, Christine Wheatley.  We are very pleased to have Christine as part of the team.  We had a very informative day and found it useful to discuss approaches to the support requests we had each dealt with. 
 
Fundraising
Our attendance at events to raise awareness, our support materials, our website, input to research and our public awareness campaigning are only possible because of our wonderful fundraisers.  We salute each and every one of you.    

Chloe and Gary Conroy devastatingly lost their baby girl, Aila, to CMV last year.  After a very successful charity night event of music and a raffle (organised by Chloe and her family) on May 12th, Gary Conroy and James McKenna successfully completed the Ironman 70.3 in Staffordshire on 12th June, They managed to raise a staggering £4957 so far.. And there's more coming in!
 
A charity golf event was held in Poole on Sunday 15th May 2016. The day was organised by the family of one of our trustees, Sharon. Sharon's baby boy, Oscar, was stillborn at 34 weeks last March, due to CMV.
 
With the help of 48 keen golfers, their wives, friends and family, the day was a huge success! And the sun was shining!  The event raised £3000 for CMV Action, which is money we can't thank them enough for. 
 
Thank you and well done to all who took part in such fantastic events!
 
The CMV Action Trustees
Caroline, Jan, Kat, Liz, Tom, Sarah, Sarah and Sharon


 

Upcoming Events

CMV Action will be at the following Events

July 2016
Maternity, Midwifery and Baby event in Birmingham 

October 2016
Royal College of Midwives Conference in Harrogate, October 19, 2016
 

Fundraisers

Sharon Robinson and her family


Gary Conroy and his family

 

Get in touch



We offer advice and support to anyone affected by Congenital CMV.
We can put families in touch with each other if they have similar issues or are in the same locality.

info@cmvaction.org.uk

 

 

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