Making wellbeing a priority
A message from Debbie,
CMV Connect Project Coordinator
September was a busy month for CMV Connect, with three online sessions and the start of some new ways for families to get involved with CMV Action.
We were delighted to welcome Professor Chrissie Jones for our “What is CMV?” session. Eleven people joined, and there were lots of great questions. We also held a volunteer information session and an introduction to supporting siblings with Sibs. Thank you to everyone who came along. See below for a great Halloween craft session Sibs have on!
Our WhatsApp communities have been busy this month. It’s been lovely to see experienced families offering reassurance and sharing what they’ve learned with families who have recently had a diagnosis. The Hub has also been a great place for sharing research and resources to help more people understand CMV.
You said, we did
Your feedback shapes what we do next:
You told us newly diagnosed families need clearer information, and value hearing directly from clinicians.
We’re planning more expert-led sessions and looking at recording talks so you can watch them in your own time.
You told us you like time to talk with other families…
so we’ll build more discussion time into future sessions.
You told us parents and carers need more support with their own wellbeing.
We’re making wellbeing part of everything we do.
What’s new
Looking after you
When you’re caring for a child with cCMV, it’s natural to put everyone else first. Your wellbeing matters too. Looking after yourself doesn’t have to mean finding time you don’t have: small wellbeing moments count, like something to eat, a glass of water, a few minutes outside, or a message to someone who understands. These small moments really do make a difference.
When parents and carers are supported, the whole family is better able to thrive. We’re working with our wellbeing therapist to make sure wellbeing is at the centre of how we support families, and we’ll share more about this soon.
Current opportunities to get involved
Have your say in CMV Action
CMV Action was started by parents, and we want families to have a real say in how the charity is run.
This autumn, a small group of families will help us design how that works.
What they create will go to our trustees in spring 2027, and we’ll keep you updated along the way.
If you’d like to help shape future services and contribute your lived experience, we’d love to hear from you.
Click here to get in touch
Family Ambassadors
We’re starting a Family Ambassador programme to help more people hear about cCMV. We’re beginning with a small group who will join our team at talks and conferences for health professionals and students.
More ways to get involved, such as sharing information with your GP or nursery, will follow once our new website and materials are ready.
If you’re interested, now or later, email Debbie at debbierennie@cmvaction.org.uk with your name, where you live and what interests you, or keep an eye out on our socials!
Coming up in October
Art sessions for young siblings
Charity Sibs, are running two art sessions for young siblings on Saturday 31st October. These will be facilitated by our brilliant friends from Artpod and a member of the Sibs team will be present. All materials will be posted out in advance. Sessions are free to attend, but we do ask you consider making a £5 donation to help with postage costs.
- Session 10am to 11.30 noon is for young siblings aged 4-10 (making stick dragon puppets) SOLD OUT
- Session 12.30 pm to 2pm is for siblings aged 11-17 (making dragon hand puppets)
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.
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.
