Our final CMV Connect update of 2025…
A message from Debbie,
CMV Connect Project Coordinator
Our fourth update shares a snapshot of the ongoing work alongside families affected by congenital CMV. Over the past month, much of the focus has been on listening to families’ stories, offering emotional and practical support, and helping families feel a little less alone as they find their way after a CMV diagnosis. Families’ experiences and feedback continue to guide this work, shaping support in ways that feel relevant, responsive, and genuinely helpful.
We’ve had our second meeting of the Family Advisory Panel that I tell you more about below and we’ve been working on developing an information session for anyone who wants to find out more about volunteering with us.
As ever, I really appreciate your continued involvement and support.
Thank you!
Festive Connect Online Session (2nd December)
Thanks to all who attended!
At the start of the month, we came together for our online Festive Connect Session, and it was truly something special.
Families from our CMV Action Community joined from their own homes to share a warm, relaxed space where everyone just got it.
The session began with gentle, light-hearted introductions, before opening up to the real, honest conversations that so often go unheard – the emotional highs and lows, the medical challenges, and the constant uncertainty that comes with life affected by CMV.
Parents spoke openly about feelings of isolation, the lack of awareness and understanding around CMV, and the impact it can have on the entire family, including siblings. There were tears, nods of recognition, and moments of deep connection.
Alongside the challenges, there was also so much strength displayed. Pride in children’s progress, shared coping strategies, and the quiet resilience that runs through this community shone through.
We ended the session by choosing small acts of self-care to hold onto and by giving ourselves permission to lean into the chaos of the festive season, together.
The session received positive feedback, with one participant telling us the most helpful bit for them was
‘listening to people, relating to other people. Often I find myself feeling guilty for something worrying me or upsetting me or frustrating me on this journey so finding people with the same thoughts and feelings really helps me validate my own.’
In 2026 we’ll be hosting more of these types of sessions and look forward to welcoming more members of our community.
Family Advisory Panel
Our second Family Advisory Panel meeting was a really helpful conversation that directly shaped our plans for future online sessions. Panel members shared honest insights about what families need at different stages of their CMV journey, from understanding CMV and navigating professionals to emotional wellbeing, sibling support and advocacy. These discussions have helped us think about what topics to focus on, who sessions should be for, and how they should be delivered, ensuring upcoming online sessions are practical, accessible and truly guided by family experience.
Self-care Tips!
We know that this time of year can often bring extra stress. Here are 3 steps to help you cope during this busy time of year…
Take moments just for you
Finding quiet moments can make a big difference. This might be listening to music, practising mindfulness, or following a short, seated exercise, yoga or dance video. Many people find online videos or apps helpful, and the NHS website also has ideas for simple exercises you can do at home.
Get outside or let fresh air in
Fresh air can help clear your head and bring your focus back to the present. Opening a window, spending time in the garden, or going for a short walk or jog can all help reduce feelings of overwhelm.
Stay connected with others
Keeping in touch with friends, family and others by phone or online can be a real comfort. Sharing how you’re feeling with someone who understands can bring relief. If you haven’t already, you can you can join our WhatsApp community here
Get Involved
We love seeing our community come together, and there are plenty of ways to get involved in the coming months:
- Share your feedback. We want to hear what kind of support or events would mean the most to you, complete any surveys, or drop me an email at debbierennie@cmvaction.org.uk
- Volunteer your time or skills. Every minute of volunteer time helps us grow our reach and impact. We are holding an online session in January to share information about what volunteering with us could like for you (see below).
Coming up in January…
Online Volunteer Information Sessions. Find out more...
Thank You
As December comes to a close, we want to say a heartfelt thank you for everything you do to support CMV Action. Whether you’ve shared your story, joined an event, or connected with others in our online community, you play a vital part in making this organisation what it is. We’re looking forward to sharing more news and updates with you in the New Year.
CMV Connect has been made possible thanks to funding from National Lottery Community Fund.