Keep in touch with the latest from CMV Action, what events we’re organising and what you can get involved in.

December 2020

Community fundraiser-job opportunity

In January we will be advertising for a part-time home based role as a community fundraiser. We are looking for someone who can use their fundraising experience to support the charity. Look out for details on our Facebook page and website in the new year.

Note from the Trustees

This has been a difficult year for so many of our families.  In 2020 we supported over 200 families and pregnant women who have been affected by the CMV virus and our new Facebook group has 188 members who have helped support each other by sharing questions and advice, particularly important when so many are at home.

As a charity we have had to adapt the way we work. Fundraising events have been limited but we have had some fantastic support from those doing virtual or individual events. Support volunteers have needed to keep up to date with Covid19 as well as CMV and take into account that face to face medical appointments have been fewer. We have held Trustee meetings regularly on Zoom as we have not met face to face. We have continued to raise awareness by attending meetings and conferences virtually.

We are now looking forward to developing our strategy for the next three years at the start of the next year. Your fundraising and support for the charity means we have the opportunity to look at the next stage of our work. THANK YOU to everyone who has helped us get to this point. We could not do this without you.

New medical advisor at CMV Action

CMV Action is delighted that Asma Khalil, Professor of Obstetrics and Maternal-Fetal Medicine at St George’s University Hospital (University of London) has joined CMV Action as one of our Medical Advisors.

Asma is a subspecialist in Maternal and Fetal Medicine, specialising in scanning women and babies with complications in pregnancy and maintains a busy role in research and teaching. She is the lead for the Multiple Pregnancy service at St George’s Hospital, the referral unit for the South West London region, but also cares for women with low risk pregnancies.

Asma has led on the RCOG impact paper on congenital CMV infection and the recent ISUOG guideline on congenital infections.  The ISUOG guideline contained the result of some exciting research concerning women with CMV infection in early pregnancy, showing that in a randomised control trial the use of oral valganciclovir in women with primary maternal infection reduces the risk of vertical transmission by about 70%.

Channel Swim on behalf of CMV Action

On Sunday, 6th September, 2020, Rupert Allhusen completed a fantastic challenge to raise funds for CMV Action and another charity, the RHF Defibrillator Fund.  Rupert, a keen and many capped rugby player, completed the grueling 34.3 mile swim in 15 hours and 15 minutes and to date has raised the most fabulous sum of £37,630 to be split between the two charities.

Setting off from Shakespeare Beach near Dover, with a support crew of six to supply warm sugared drinks and endless encouragement, as well as, for a time, a companion to swim alongside him, Rupert endured the cold, the monotony and the dangerous tides to finally reach Wissant Bay in France.  Cheering, shouts of “Allez, Allez” and clapping from the French locals and holiday makers on the beach welcomed Rupert in.

All at CMV Action, on behalf of all those we support, are so grateful to Rupert and his support team for such a fantastic and amazing achievement.  CMV Action rely on fundraisers to enable us to run the charity, particularly in this difficult time for fundraising.  The amount Rupert raised will help us significantly with our aims to raise awareness of the CMV virus, support pregnant women and families affected and to aid research.

Lots more information on Rupert’s channel swim can be found at http://iamswimmingthechannel.com/

The Trustees would like to wish you all a happy Christmas and send our best wishes for next year.

The CMV Action Trustees

Angela, Amy, Jan, Kate, Liz, Sarah, Suzie and Tom

Summer 2020

We hope you and your families are keeping well. It has been a challenging time for everyone and we wanted to update you about the last few months at CMV Action. We have still met regularly as Trustees but this has been online. We have not allowed the situation to stop our vital work.

Awareness Month

June was International Awareness Month and this year we decided to make it low key in view of the virus. We started by launching our Facebook support group CMV Action UK – family support. We currently have 162 members from the UK who have been sharing their stories, asking questions and offering each other advice. Thank you to all who have joined and embraced this new venture. New members welcome.

One of our trustees, Angela, took part in an interview with CMV Canada explaining the challenges we face in the UK and what we are doing as a charity. In conjunction with other international CMV groups we held a virtual fundraising event on 27th June. Families ran, cycled or swam and shared their activities on Facebook. We raised an amazing £ 6000 for CMV Action and the money is still coming in. Thank you to all who took part and raised awareness during the month.

We concluded awareness month on a sombre note with candle lighting to remember all those babies and children affected by CMV who died during pregnancy, at or soon after birth, or in infancy or childhood.

Support

Our team of support volunteers all work from home so have continued as before. In the early weeks of lockdown we saw an increase in requests from pregnant women concerned about the effect of the virus on the baby. We also supported parents of children with disabilities who wanted to know if their child would be more susceptible to the virus. We always took advice from our medical advisors as this was a new and changing area for us.

Fundraising

In addition to the virtual event many of our supporters are still fundraising on our behalf including birthday fundraisers on Facebook. In late August one of our amazing supporters, Rupert, will be swimming the Channel and we will also see our logo on Tividale Football Club – a local team’s shirts. If you have any ideas for fundraising we can support you. We receive no government funding so your support is crucial.

SPECIAL GUEST:  In future newsletters we will include some information from a guest writer who has an interest in CMV. You are welcome to suggest someone we can interview.

Future Plans

We are currently undertaking the huge project of updating all our literature. This is being done with advice from our team of medical advisors. We are still offering support and raising awareness (over Zoom!). We are awaiting news of what conferences will take place but are delighted to confirm that the 2022 International conference will take place in Cambridge. We are hoping to be able to help plan this and include as many families as possible. Look out for further updates on our website.

THANK YOU all for your support.  Please remember you can contact us at any time if you need advice.

We all hope you have a lovely summer and we will be in touch in the Autumn with details of our work to raise awareness.

The Trustees- Angela, Amy, Kate, Jan, Liz, Sarah, Suzie and Tom.

December 2019

Thank you to all our supporters and fundraisers who have made it possible for us to achieve all we have in 2019

Below is a summary of our achievements.

Just some of the things we achieved in 2019

  • Published ‘Counting the Costs of CMV’
  • Had over 50K website user visits and over 100K unique page views
  • Gave out over 100 awareness packs
  • Held 5 webinars reaching over 50 professionals
  • 30 midwives completed our online training
  • Supported families – through the website, phone calls, emails and social media
  • Worked with International groups to bring about change

Along the way we:

  • Collaborated with other charities – Sands, NDCS, CICS, AVUK, Child Bereavement UK, BLISS, The Elizabeth Foundation
  • Joined the Pregnancy and Baby Charities Network
  • Held 3 face to face Trustee meetings and many conference calls
  • Had support calls with our medical advisors to ensure we support families in the best possible way

And thank you to all our amazing fundraisers: – including

Barcelona Marathon, 24 hour live stream, Stirling Half Marathon, London Marathon, Bristol 10K, Tough Mudder, Belfast Marathon, Hair cuts, Folk Festival, Tower Ultra Marathon, La Sportiva Lavaredo Ultra Trail, La Sportiva Cortina Ultra Trail, Knaresborough Bed Race, St Albans Half Marathon, Triathlon, St George’s Jennerosity event, Reigate College Community, Porthcawl 10K, Bingo night, Cycle Endurance, Great North Run, 10×10 Dragon’s Den, Nursery fundraiser, Madeuptriathlon, Great South Run, Fulham 10K, Fundraising Ball, Fishing Competition …… to name but a few.

Now that all remains to us is to wish you all a very happy Christmas and a peaceful New Year.

From all at CMV Action

Sarah, Jan, Kate, Tom, Liz, Amy, Sharon

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