2020 Summer

     

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.

 

     

Our Stories

Thomas is 8 years old and has brain conditions due to CMV. He is severely disabled as a result but he is the happiest little boy in the world.  In her blog, Thomas' mum Lucy,... Read more
We noticed Ruby wasn't responding to sound when she was about 18 months old. My GP said she was fine and said I was a worrying first time mum. Without the support of our GP, we paid... Read more

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