CMV Connect May Round-Up

One year of CMV Connect…

A message from Debbie,

CMV Connect Project Coordinator

May has meant a lot of evaluation – of the Family Advisory Panel, the Finding Strength Together session and the whole of the first year of the Connect Project, which was funded by The National Lottery. We’ve included some of the findings below and there will be a wider report issued later in the month. 

Thank you to those that completed the end of year 1 survey – I really appreciate you taking the time to give us your valuable feedback.  

Finding Strength Together session 

We held our ‘Finding Strength Together’ session seemed really positive and helpful for those that attended. When we asked people who attended what they would say to encourage other people to attend, they told us:  

‘It provided a space to talk as much as I wanted, and listen to other parents who are in a similar position. It made me feel less alone in my journey’. 

‘It helps you feel not alone, there are people who listen and are in the same boat’. 

 We will be planning more sessions in the future, so please watch this space.  

Drop In and Connect 

We had our last session in May, again which was a bit quieter. As part of the project evaluation, we are looking at how we balance what families tell us they want, but the realities of managing all the things you have to do.  

Our Drop-In & Connect sessions are currently paused. However, we may hold more sessions or sessions like this in the future, so please watch this space or follow us on social media for updates. 

Family Advisory Panel  

Everyone who answered the survey said they felt like a genuine voice, that their input led to real changes, and that it didn’t feel like tokenism. Everyone said they would join the Panel again next year. 

There was a recommendation that we carry  on the work, expand it and makes sure that the Panel is representative of all cCMV families.  

A year of CMV Connect: what you told us 

It has been a year since CMV Connect launched, and we wanted to take a moment to share what the past twelve months have looked like.

Over 107 families have joined our WhatsApp communities, 21 attended our online sessions, and four families came to our first therapist-facilitated wellbeing session in May. We have handled 41 support service contacts and mapped families across nine UK regions. The Family Advisory Panel has met five times and shaped some of the most important decisions we have made along the way. 

We asked families how CMV Connect had made a difference. All eight who completed our End of Year survey said it had made a big difference to their life. All felt less isolated, more confident speaking to health professionals, and better able to advocate for their child.

The average recommendation score was 9.8 out of 10. 

But what has stayed with us most is what you said in your own words. About never having met another family with a child with cCMV before. About the relief of finding people who understand without needing an explanation. We have tried to reflect all of that honestly in our Year 1 evaluation, including the things that did not go to plan and what we want to do better. 

We will be sharing the full evaluation in July and would love to hear what you think. If you have not yet filled in the End of Year survey and would like to, it is still open –  every response genuinely helps.CMV Connect End of Year 1 Survey – Fill in form 

Thank you for being part of this. Year 2 starts now. 

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.