CMV Connect March Round-Up

Monthly, Drop-in and Connect Sessions are here…

A message from Debbie,

CMV Connect Project Coordinator

This update shares the work that has been ongoing, building on what families have been telling us and what we hear in the conversations we have been having with families.  

As ever your continued involvement and support is so important and at the heart of what we do.  

Thank you! 

Drop In and Connect 

We had our first drop-in session in March. A number of families dropped in and it was really positive to listen to the quality of the conversations, experiences shared and the space where families understood each other’s challenges as well as positives! 

We are running these informal online sessions for families to come together in a welcoming space with no set agenda, just time to chat, catch up, share experiences, ask questions, or simply listen and connect with others who understand the CMV journey.  

Our next session is Tuesday 13th April at 10.30am. We’d love to see you there for conversation, community and support. 

Introduction to Supporting Siblings Webinar

Thursday 30th April at 7pm via Zoom

We are delighted to be working with Sibs, a UK charity for brothers and sisters of disabled children and adults, to bring this free webinar for families affected by cCMV.  

We have had feedback and requests about thinking about the needs of siblings in the family and how best to support them when their brother or sister is affected by cCMV.  

The session is for parents of disabled children who want to know more about supporting siblings.  It will help parents find ways of giving attention, information, and support to the other children in their families 

What we hope you will gain: 

• Insight into siblings’ needs and experiences 

• Practical ideas for giving siblings attention 

• Further sources of information 

Registration is required and you can sign up by clicking the link below: 

Upcoming sessions 

We are also planning to hold an information session on cCMV with a paediatric infectious disease specialist in April  – watch this space for a date soon! 

This May, we’ll be hosting a Wellbeing session – led by a counsellor.  This aim of this session is to give parents a safe and supportive space to talk about their experiences, meet others in similar situations, and find practical ways to look after their mental and physical health 

Connecting with clinicians – we need your feedback! 

 We mentioned last month we were liaising with doctors at Imperial College Healthcare Trust about some leaflets for children and young people they have developed to give them information about cCMV.  

These are currently out for consultation, and we would really appreciate it if you could take some time to provide your feedback on them.  Click here for info. 

Reporting  

Across CMV Action, we’ve been working hard building our information for the annual report over the past few weeks, including on the Connect Project. It’s been a valuable opportunity to look back on everything we’ve achieved together over the last year, from supporting families and raising awareness to strengthening our community and partnerships. We’re looking forward to sharing more with you soon and celebrating the difference your support has made. 

There has been some really strong themes that have emerged from the conversations with families around the lack of awareness of cCMV, the day to day challenges, and some support and comfort that CMV Action has brought.  

Volunteer recruitment  

We are always looking for new volunteers to join CMV Action. Whether you have a little time or a lot, there are lots of ways to get involved, and every bit of support makes a real difference to families affected by cCMV. 

Current opportunities are:  

• WhatsApp moderator

• Support service volunteer 

We provide induction, training and support and you get to be part of a lovely team of volunteers. Please get in touch if you are interested in volunteering with us or visit our volunteering page for more information and to apply.

Online Communities

Thank You

Thank you for being such an important part of the CMV Action community. Whether you’ve shared your experiences or connected with others online, your support helps families feel less alone. We look forward to continuing our work together throughout 2026 and sharing more updates and opportunities to get involved. 

Share your feedback. Let us know your thoughts – we want to hear what kind of support or events would mean the most to you – drop me an email at debbierennie@cmvaction.org.uk 

CMV Connect has been made possible thanks to funding from National Lottery Community Fund.