November’s been a busy and inspiring month for CMV Connect.
Here are our latest updates…
Meet the Team
We kicked off the month with our first Meet the Team event, and the response was incredibly positive. Seven families joined us for open, heartfelt conversations about their experiences, alongside updates from our team at CMV Action. As one parent shared…
“I found it quite hard when we got this diagnosis. I had to explain it to professionals.”
‘Where are you?’ Survey
Thank you to everyone who completed our ‘Where are you?’ survey. To date we’ve had over 30 responses (so far the NorthWest of England is well represented), which is fantastic, but it would be great if we could get some more.
We want to help build stronger local connections across our CMV community so want to hear from as many our community as possible. Having this information will help us to:
- Connect members who live close by to each other
- Support local meet-ups and peer groups
- Share area-specific resources and information
If you haven’t already, could we please ask you to take a minute to fill out the survey.
You can find the survey here.
Family Advisory Panel
Our Family Advisory Panel met for the first time and held a really positive and focussed discussion. The Panel Members want to make sure everyone’s CMV experiences are recognised, and they want to help professionals understand CMV better. They’re also keen to support other families by sharing what they’ve learned, offer insight from life beyond early diagnosis, push for better resources and training, and help build a strong, supportive community – everything we hope to achieve through CMV Connect!
At our December meeting, we’ll be diving into which helpful topics we want to feature in the expert-led sessions we’re planning to launch in 2026.
A message from Debbie,
CMV Connect Project Coordinator
As I get to know more CMV Action families each month, I’m continually struck by your strength and honesty. Your commitment to your children, and to supporting each other, shines through in everything you do. It’s a privilege to hear your stories and learn from your experiences. Thank you for welcoming me into your community and for the trust you’ve shown.
It’s been wonderful to get to meet so many of you and listen to your stories and hear your feedback. All of the information that’s been shared has been incredibly helpful and is supporting my work behind the scenes to strengthen the support we offer through our helpline and email services.
As November wraps up, I want to express the gratitude of the CMV Action Team, for all the ways you support CMV Action. Whether you share your story, take part in events, or engage in our online community, you play a vital role in shaping this organisation.
We love seeing our community come together, and there are plenty of ways to get involved in the months ahead:
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Volunteer your time or skills. Every minute of volunteer support helps us grow our reach and impact. Get in touch if you’re interested in becoming a moderator on our WhatsApp groups.
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Share your feedback. We want to hear what kinds of support or events matter most to you – complete any surveys or drop me an email at debbierennie@cmvaction.org.uk.
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Join us at our next event, which brings us to something we’re excited to invite you to…
I really appreciate your continued involvement and support.
Thank you!
If you haven’t already, check whether your family might be eligible for disability related financial support such as DLA (or equivalent benefits in your area of the country). Even if you’re unsure, it can worth applying. Many families qualify once they describe their child’s day-to-day needs in detail. For clear guidance on what you may be entitled to, you can look at the Citizens Advice website for up-to-date information and support.
CMV Connect Support Services
Did you know we have a telephone and email support line? It’s ran by some of our amazing volunteers. You can read more about it here.
We’ve handled over 50 enquiries since February this year and we are currently reviewing the type of enquiries we receive to make sure that we are giving the best advice we can.
If you’ve used the support line, do feel free to get in touch and let us know if it as helpful or if you think anything could be changed. We’d love to hear from you.
We will be looking to expand out volunteer team in the New Year so keep an eye out on more details if this something that would interest you.
Connect with us online
We continue to see our Facebook and WhatsApp groups grow, and we’re so proud to see our community really coming together. If you haven’t joined yet, now is the perfect time!
to connect, get quick updates, and be part of the conversation in real time.
to engage with others, share your experiences, and stay updated on everything happening in our community.
CMV Connect has been made possible thanks to funding from National Lottery Community Fund.