Autumn 2013

     

NEW LEADERSHIP FOR THE BOARD OF TRUSTEES

 

After nearly three years at the helm of CMV Action Gaye Tomlinson has decided to step down and pass on the reins. Some of the key achievements over the past three years include registering as a charity, holding the first family party and producing new information leaflets for families.

 

My name is Caroline Star and I took over as Chair at the end of November.  I have been closely involved with the charity since the outset and really look forward to this opportunity to lead the organisation in the next phase of its development.  I bring a professional background as a senior policy maker combined with my personal experiences of bringing up a little girl with CMV.  I hope that I can use this experience to drive some exciting changes over coming years.

 

I am delighted to announce that Tom Kelman has been appointed as the new Treasurer of CMV Action.  Tom has 24 years experience as a Chartered Accountant and has held Finance Director roles in both the private and charity sectors. He is passionate about the charity sector and helping charitable organisations achieve a sustainable financial position

 

I am also very excited to introduce Kat Foster, our new Head of Awareness.  She has a professional background as a marketing and communications consultant.  She also has personal experience of contracting and dealing with CMV whilst pregnant with her second daughter.  She was dumbfounded to have never heard of CMV and the implications for pregnant women and is incredibly passionate about raising awareness of CMV.  

 

You can find out about all the trustees on our website - http://cmvaction.org.uk/our-trustees/. 

 

AGM 2014
The 2014 AGM will be held on Saturday 26th April, in London.  More information will be available in the new year.

 

AWARENESS UPDATE
2013 is ending on very positive notes for raising awareness of CMV.

 

Scottish Mainstream Press
We've been talking to a reporter from Scotland's Daily Record newspaper over the past few weeks.  We're hopeful that there will be an article about congenital CMV very shortly.  It's a fantastic awareness raising opportunity but also great that mainstream press are starting to take an interest.  So Scottish supporters watch out for it!  Thank you to Maddy and Louise for getting the paper interested in your story.

 

NCT Newsletters

 

We want to thank our Secretary Jan who has been very busy raising awareness of CMV.
Jan attended a Review of Maternity and Paediatric Services in East Sussex in November.   

 

Two points came from the meeting:
The Clinical Commissioning Group will report back on the lack of expertise in CMV in the area.

 

As Jan was there talking about CMV, the local NCT group asked her to write an article for their newsletter.  This was passed to other NCT groups and also ended up on Motherhood Diaries - a new online magazine for parents.http://motherhooddiaries.com/cytomegalovirus-what-you-should-know/.  Jan wrote from very personal experience and we are very pleased that the NCT passed on the article and it got even more exposure in Motherhood Diaries.  

 

Small progress but every little helps – watch out for similar reviews in your area – you can give your views in a telephone interview too.

 

Baby Bumps Calendar
Jennifer Horner from Pudsey, Leeds, has had a second article published to raise awareness for CMV and her baby bump calendar.  The Yorkshire Local featured the pregnant ladies who are raising awareness and funds for CMV Action.  Jennifer also featured on Real Radio in the news section talking about CMV. Jennifer Horner's Bumps Calendar is now out and selling well.  If you are interested, please do get in touch.

 

Awareness for Professionals
The British Paediatric Infectious Diseases Specialists' meeting was held in December.  CMV Action were able to give each specialist a CMV Awareness Pack.  We know most delegates took copies as we only had a few remaining.   We are sure that delegates will find these very helpful when discussing CMV with parents.  Again, another great opportunity for raising awareness of CMV and the charity.

 

Kimberley Walsh
Kimberley Walsh is appearing on All Star Family Fortunes and will donate her winnings to CMV Action.  The very talented singer, dancer and actress filmed the show in early November and the show will be on air 5th January at 7:45pm on ITV1.  CMV Action are incredibly touched that Kimberley Walsh has chosen CMV Action for her winnings.  Lisa Midgely is a personal friend of Kimberly’s.  You can read why Kimberley is supporting us by reading Christian and Lisa’s touching story here – Christian’s Story.

2014 onwards
We are working hard on our strategy and communications plans to make sure we don't miss any opportunities for CMV Action.  2014 dates could include a CMV Awareness Week and Hand Washing Campaign. 

 

If you have an idea or personal project to raise awareness of CMV, please do get in touch.

 

Make sure you are joining in the conversation with us on Facebook, Twitter and LinkedIn.

 

RESEARCH UPDATE
A study into oral antiviral treatment has just presented a summary of its results.  Babies under 4 weeks old who were born with CMV were given either 6 weeks or 6 months of valganciclovir treatment.  The results showed a small positive improvement in the infants who had 6 months of treatment compared with 6 weeks.  Its early days in considering the implications for treatment in the UK.  The summary has not been fully debated yet and it will be some months yet before the paper with the full details of the results will be published. But this is a very interesting development for parents to be aware of and CMV Action will publish some further details and advice for families in the New Year. In the meantime you can read the abstract that has just been presented.

 

FUNDRAISING UPDATE
Charity Ball - 8th March 2014, Radisson Blu Edwardian Heathrow Hotel

 

There are still a few tables left for our big fundraising event, so why not get a group together for a great night out that will put the dark winter nights behnd you!  Tickets are £75 each and include a sparkling wine reception, 3-course dinner, half a bottle of wine as well as casino, live entertainment, raffle and auction.  We have some amazing prizes on offer including a holiday, 'money can't buy' golf event tickets, Lee Evans at the O2 tickets, laptop and more.  We have also secured a great rate at the hotel for overnight stays and being surrounded by lots of other hotels, including a Travelodge, there are plenty of places to stay to suit any budget.  If you would like to come, please e-mail sarah@cmvaction.org.uk for a booking form.

 

Sadly, we have failed to secure a confectionery industry donor to help with our sweetie tree centrepieces but perhaps you have a business you'd like to advertise by sponsoring a tree.  Your company name and contact details will be placed on the tree in exchange for a £20 donation to CMV Action - please contact sarah@cmvaction.org.uk if you'd like to help covering some of costs in putting on this great event.

 

Great South Run
This event took place on a blustery day in October and was our first official sporting event with 11 people running to raise awareness and money for CMV Action.  Huge thanks to Emily Blackmore, Patrick Blackmore, Daniel & Danni Mason, Malcolm Capon, Paul Baker, Camilla Tornoe, Ellie Lamey, Joss Durham, Owen Toms & Matt Beadell who collectively have raised a whopping £6,850!  And a special well done to our top fundraiser, Ellie, who raised £1,865.  Thank you all so much for your support!

     

Our Stories

  In 2015 we lost our daughter Leia to cmv. This is Leia. At 22 weeks I was diagnosed with CMV and Leia had Congenital CMV (passed through the placenta).   Most people have... Read more
Clemmie was born 3 weeks early while my husband was serving with the British Army in Afghanistan. Up to that point, I’d had a normal pregnancy with no adverse scans or distinctive illness... Read more

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