CMV Action Newsletter - Research, Awareness and Fundraising Updates
Research Update Developing a new screening device for CMV
Swansea University have announced a 3-year project to develop a point of care device to diagnose CMV. This means that health professionals could diagnose congenital CMV on the spot without having to send samples off to a lab to be analysed. We know that many of us didn't receive a diagnosis in time to start treatment. This technology could change that. CMV Action are very excited to be on the project Steering Group and we look forward to advising on the practical aspects of how the technology could be applied in a real-life setting.
Testing antiviral drugs for older children
UK and US researchers will be collaborating on a new trial to test out giving an oral antiviral drug (valganciclovir) to children diagnosed with CMV. The trial should start early in the new year. The trial will test whether the drug has an impact on babies and toddlers up to the age of 4. At the moment babies can only start treatment if they are diagnosed before 4 weeks old which sadly doesn’t always happen. Some of our families have already been helping by giving the researchers feedback on their study information materials. When the trial is ready to start we will send out more information on which children may be eligible to participate and how you can find out more.
Screening targeted newborns for CMV
In partnership with researchers at St Georges University of London, we submitted a research bid to investigate whether testing for congenital CMV can be integrated into the Newborn Hearing Screening Programme (NHSP) across five different large regions in England. Previous research has shown that it’s feasible for newborn babies who fail their hearing test to be given a test for CMV. Fast diagnosis allows more babies to receive antiviral treatment in the first month of life and can prevent hearing loss from getting worse.
This research would give a more detailed picture on implementation costs and help us build a strong case for regions to invest in CMV diagnostics. We will find out whether the bid has been successful at the end of the month. We have all our fingers and toes crossed – wish us luck!
Utah CMV Conference
The 2014 CMV Public Health and Policy Conference was held in the US over the summer. Sadly CMV Action Trustees couldn’t make it in person. However the conference organisers have made the content really accessible and a lot of the presentations have been posted online. There's loads of interesting stuff on there - particularly as the conference was held in Utah, which passed legislation last year mandating public education and CMV screening for babies who fail their hearing test.
If you click on the session title on this agenda page then the presentations are saved at the bottom of the page after the abstract.
Chair Caroline Star also video-conferenced in to a virtual meeting of CMV organisations from across the world. It was fantastic to speak to so many others who share our mission. We agreed that there’s a big opportunity to work together on increasing CMV awareness amongst women, health professionals and policy makers. There’s a lot of exciting work going on: check out some of our fellow CMV crusaders:Brendan B. McGinnis Congenital CMV Foundation, Chanter, Marcher, Vivre (France), CMV Help/Buck Buck Foundation, the Congenital CMV Association of Australia, Guiding Guardians, Maddie’s Mission, Stop CMV, Utah CMV Council
Educating pregnant women about CMV prevention
One of the presentations from Utah that caught our eye was an Italian study on antenatal hygiene counseling for pregnant women at high risk of CMV infection for personal or occupational reasons. The trial is still in progress but results so far suggest the approach is effective and reduces the percentage of women with a primary CMV infection in pregnancy.
This is a real gap in the UK research picture that we need to fill. So, over the coming months CMV Action will be working with researchers at St Georges to develop a research bid on antenatal CMV education in the NHS. In the meantime we’ve asked Public Health England to include information about CMV in the Start4Life emails that go to Mums and Dads-to-be. We’re delighted that following our 2014 awareness month, information about CMV is now prioritised at the top of the pregnancy infection page on NHS Choices. It would be even better if pregnant women were signposted to those pages.
June 2014 saw CMV Action running our first awareness month. CMV Action received a great amount of press coverage – both nationally and regionally including BBC South East Today, Sunday Express, Sky News, OK magazine, Heart Radio, Hertford Mercury, Bounty Magazine, Nursery World , NHS Choices and the Independent. You can see all the coverage at www.cmvaction.org.uk/news.
We think CMV Action’s first awareness month was a success – we reached out to more people than before with our support emails and phone calls. Visits to our website increased and we started really important conversations about CMV on Facebook and Twitter.
Put June 2015 in your calendar for the next CMV Action awareness month and stay tuned on how you can get involved – awareness can changes lives.
Summer Fundraising Frenzy!
Summer Fundraising Champions! There have been so many wonderful people donating and fundraising throughout 2014 and we try to thank them all personally but we apologies if we've missed anyone - we are grateful for every penny we receive. As a result of our Awareness campaign throughout June, the summer was very busy - here are some of our latest fundraising heroes:
Lindsey Cooper & Stephanie Wrigley - following the success of their fun day back in April, these lovely ladies organised a charity ball in September. Their current total on Virgin Money Giving sits at over £3,000. Stephanie also has a collecting tin at her Hair Salon, and another of Lindsey's friends has one at their cafe. Another friend of Lindsey's, Sara Haycock, also raised money for CMV Action by running the Great Manchester Run in May with her husband Mark. Yet another friend of Lindsey’s, firefighter Ste Dalton completed the Tough Mudder in September and has raised over £800 so far. Thank you all so much for your continued support!
Colette Eyres, with help from her sister Stacey, is another keen support of CMV Action. Her summer BBQ raised £530 and motivated her to run in the Sheffield Colour Me Rad event in August, raising a further £700 and counting!
Many of you will know Rebecca Blinkhorn who has organised several events for CMV Action and started our Christmas Card project this year. Supported by 3 friends (Alice, Cath & Ruth), she ran in the 'We Love Manchester' 10k in July raising over £1000. Rebecca's brother-in-law, Steven Blinkhorn, went on to organise a 24 hour cycling event at his place of work, the Ashlea in Cheadle which raised a further £1250.
Karen Vidler held an Open Garden in June at her home in Wadhurst, raising over £1,600 and still counting, including some large personal donations from people who attended the event.
August saw our first cyclists in the Prudential RideLondon-Surrey 100 – our former trustee, Mandy Parks, got on her bike with fellow riders Robert Forbes & Connie Perkins, Stacey Bogusz and Duncan Smith to battle some pretty horrendous weather conditions on a challenging 100 mile cycle ride. We are so grateful to all of you for the Herculian fundraising efforts! We have 13 places in the event on 2nd August 2015 so do get in touch if you feel inspired!
Another supporter of CMV Action, Lisa Midgeley, has been organising events and inspiring friends and family to raise money for us. Her brother Paul completed the Yorkshire 3 Peaks Challenge, has organised dress down days at the Clydesdale and Yorkshire banks and a ‘bag packing’ fundraiser at Marks and Spencer. His fundraising to date has raised around £4,000!
Charlotte Ackrill was all set to take one of our places in the Great London Swim in August, with her friend, Georgina Jones. The event was cancelled but the girls were still determined to swim and raised funds of over £400! Keeping the fundraising effort in the family, Mandy Ackrill, has also raised money for us, collecting at the launch of the Heart & Soul Holistic Centre back in June and she’s still going!
You sporting types have been raising money for CMV Action in these events too: Jennifer Groves, Paula Griffin & John Quinn in the Colour Run 5k in Belfast in August, Claire Jackson in the 5k Autumn Forest Run which has raised over £300 so far, Nicola Carter & Neil Myatt in the Neon Run in Leeds in October and we had 12 runners (Vanda & Helen Teles, Daniel & Danni Mason, Laura Busson, Lisa Wilmshurt, Paul Baker, Harry Pycroft, Anna Prior, Stuart Henshall, Rebecca Durham and Sarah Beadell) in the Great South Run last month too.
Carly Downs summer car boot sale raised over £100 and she is about to start a new fundraising venture – look out for details on our website soon.
Walsh Daily, one of our lovely patron Kimberley Walsh's fan groups, set up a page on Virgin Money Giving for those fans wanting to send Kimberley a message after the birth of her son, and make a difference to a cause close to her heart with a donation to CMV Action. Another novel fundraising scheme that has raised over £300 so far.
And finally, Hailsham Rotary raised a fantastic £2000 – thank you for an amazing donation which will be a real help with our next awareness campaign amongst healthcare professionals.
We hope we haven’t forgotten anyone – there have been so many wonderful fundraisers – so please accept our apologies and sincere thanks to anyone not mentioned here. See all the fundraisers and events here.
Our Trustee, Jan Pearman and our Support Volunteer Sarah Dewar both attended the Ear Foundation day held in London recently. The day was entitled ‘CMV and Deafness’ and was open to parents and professionals. Simone Walter, Consultant in Audiovestibular Medicine from St George’s Hospital in London talked about the identification, incidence and effects of CMV and the emotional impact upon the family. The afternoon speaker was Elaine O’Riordan, a Clinical Specialist OT from leapchildrenstherapy talking about Sensory Integration.
Jan talked about the charity and Sarah gave her story of being mother of a child who is deaf because of CMV. The day was interesting and fruitful – an excellent opportunity to learn, support and raise awareness all in one go! The next course is in Nottingham in March 2014 – if you get a chance, it is well worth attending.
The BATOD (British Association of Teachers of the Deaf ) in Wales had a training day in July and asked for someone from CMV Action to come and talk about CMV and Deafness. We did and it was very successful. There were 50+ Teachers of the Deaf from all over Wales. Lovely to know that they are starting to ask more questions about CMV and how it affects our children.
We still have our CMV Action Christmas Labels available but we have now sold out of cards (http://cmvaction.org.uk/get-involved/shop). Thank you to Rebecca Blinkhorn for arranging this for us.
If you haven’t already taken part in our member survey, you can still do so here: www.surveymonkey.com/s/P9QGGPB
Thank you to everyone for all your continued support
Caroline, Kat, Sarah, Jan, Liz and Tom
CMV Action Trustees