Welcome to the first edition of our CMV Connect Project Round-Up!
Our brand new feature keeping you up-to-date with everything CMV Connect!
What is the CMV Connect Project?
CMV Connect is our brand-new support initiative which has been made possible thanks to National Lottery Community Funding. It is part of our wider strategy to expand and adapt our support services in direct response to what families told us they needed in our 2024 Family Survey. 
Through CMV Connect, we will:
- Expand our outreach so that more people affected by congenital CMV (cCMV) find us sooner
- Create opportunities for families, carers, and individuals to connect – both online and in person
- Improve access to information, emotional support, peer networks and resources
- Build stronger partnerships with healthcare professionals, community groups, and networks
- Consistently monitor and evaluate our impact so we can learn, adjust, and grow
To put it simply: CMV Connect is about connection, compassion, and lasting change.
Introducing Debbie
We are delighted to welcome Debbie as the lead for the CMV Connect Project. Debbie brings passion, experience, and commitment to this vital work. Over the coming weeks, you’ll hear lots more from Debbie as she helps to bring CMV Connect from vision into action.
Debbie’s role includes:
- Planning, coordinating, and delivering family support initiatives
- Building connections across our community, volunteers, and partner organisations
- Organising events, groups, and campaigns
- Ensuring the voices of families and individuals guide what we do
- Helping us measure and reflect on our outcomes
You’ll see her name more in future updates, and we encourage you to reach out. Whether you’re a family member, a health professional, or someone curious about CMV to share ideas and get involved.
Debbie Rennie
What You Can Expect from the CMV Connect
Monthly Round-Up
This first edition is just to let you know about the project, which is still very much in its infancy. Going forward, this roundup will bring you:
- Updates on what has been happening (events, contacts, milestones)
- Highlights from families or professionals
- A message or insight from Debbie
- Opportunities to engage (volunteer, feedback, events)
- Quick “spotlight” on a resource or tip e.g. simple hygiene measures
Get Involved: Join our CMV Connect Advisory Panel
We want to make sure the work we’re doing through the CMV Connect Project truly matters to you – the families, individuals, and professionals who live and work with congenital CMV every day.
That’s why we’re forming a CMV Connect Family Advisory Panel – a small group of families who are impacted by cCMV who will help guide the project as it grows.
As a panel member, you will:
- Share what families find most difficult and what support would help.
- Review and improve resources (guides, events, online tools).
- Explore how to connect more families to CMV Action.
- Reflect on what works and what should continue beyond the project.
We will ask you to:
- Attend meetings (online, 60–90 minutes each).
- Share your experiences and views — lived experience is central.
- Review materials (kept short and simple) between meetings if possible.
- Respect group values: confidentiality, listening, inclusion, and kindness.
Your lived experience matters.
By joining, you’ll help ensure that CMV Connect is shaped with you and not just for you.
Thank you for being part of this journey and reading our first round-up. CMV Connect is our commitment to ensure that no one facing a cCMV diagnosis feels alone and we’re excited to build this with you.
If you have questions, ideas, or want to connect, please get in touch via our usual channels.
Best wishes,
The CMV Action Team
CMV Connect has been made possible thanks to funding from National Lottery Community Fund.