More online support sessions added…
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!
What’s Coming Up
Finding Strength Together session
We’re hosting a gentle, supportive online wellbeing session on Friday 15th May at 10am for parents and carers caring for children affected by congenital CMV. Caring for a child with CMV can bring a lot to hold emotionally, and taking care of your own wellbeing is an important part of that and not something separate or secondary.
This small-group session, led by a trauma-informed counsellor, offers a safe space to reflect, explore feelings like stress or uncertainty, and connect with others who understand. There’s no pressure to speak, you can take part in whatever way feels right for you. Spaces are limited, so if this feels helpful, you can book your place below.
Drop In and Connect
We had our second drop in session in April, which was a bit quieter, but it was the holidays.
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 12 May at 10.30am. We’d love to see you there for conversation, community and support. No sign up required – just pop in at any time during the session. Please feel free to drop in!
Introduction to Supporting Siblings Webinar
We’ve had to reschedule our Introduction to Supporting Siblings webinar to Thursday 4th June at 10.30am.
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 prior to the session. Sign up here
You can find the full calendar of upcoming
CMV Connect events HERE
Connecting with clinicians – thank you for your feedback!
The feedback we received showed strong support for the idea of child-friendly cCMV leaflets, with clear language and a helpful structure. However, families felt the content needs improving before wider use.
Key issues included the tone being too young, not enough detail about how CMV affects the body, and some unclear or unhelpful messages. There were also suggestions to make the content more relevant for different ages, more empowering for children, and visually more engaging.
Overall, families felt this is an important and much-needed resource, but it would benefit from further development with input from children. Thank you to everyone who provided feedback.
Family Advisory Panel
Our Family Advisory Panel gave feedback on the leaflets from Imperial College Hospital as well as a leaflet CMV Action are working on for doctors to give out at the point of diagnosis to let families know about CMV Action, in particular – the support service and the information resource son our website. 
It was also our final Panel (in it current form!) The Panel has been meeting since October and we really are so grateful to the families that have formed the Panel, through conversations in the early days through to the Panel members. We will be writing a report about the work of the Panel, but members have already told us it felt positive to be able to help others as well as feeling genuinely involved. I certainly know that those working with CMV Action as well as the Trustees have felt the input from the advisory panel has been essential and extremely helpful. Thank you again to those that were involved.
We’re having a little break from the Panel to think about how we can it even more effective and be even more involved in decisions in CMV Action, so watch this space!
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
Just a reminder CMV Action also has a private Facebook group and WhatsApp community for families. These spaces offer a safe and supportive environment to ask questions, share experiences, and connect with others who understand the CMV journey. If you’re not yet a member and would like to join, we’d love to welcome you.
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.