Check out our upcoming events happening this month…
A message from Debbie,
CMV Connect Project Coordinator
Over the summer period, CMV Connect continued to provide support to families through our online community and ongoing engagement work. While activity was quieter during July, August focused on planning our programme of online events for the remainder of the year, strengthening family involvement opportunities, and working with healthcare professionals to ensure family voices are represented in future research and service development.
Our WhatsApp community remained a valuable source of peer support, with families sharing experiences and advice around diagnoses, complex medical needs, education, and accessing services. The quality of support offered by parents and caregivers to one another continues to be one of the strongest aspects of our community.
During August, we planned a series of upcoming online sessions, including expert-led webinars, a volunteering information session, and opportunities for families to contribute to patient and public involvement work with clinicians and researchers. We have also continued developing our family involvement programme to ensure lived experience remains at the heart of our work.
Themes emerging from families
Throughout July and August, families shared their experiences, challenges and priorities with us. Several key themes have emerged:
- Challenges accessing healthcare services and specialist support.
- Difficulties navigating SEND processes and educational placements.
- The need for improved emotional wellbeing support for parents and caregivers.
- Limited access to respite and practical support services.
- A desire for clearer information and guidance when engaging with health, education, and social care systems.
These experiences help us understand what families need most. We will continue to use what families tell us to shape CMV Connect, develop future services and resources, and inform our wider advocacy work.
Coming up in September…
We have some great online sessions planned for you this month.
Get Involved
We’re currently encouraging community members to find out more about volunteering opportunities with CMV Connect. If you’d like to help shape future services, support other families, or contribute your lived experience, we’d love to hear from you.
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.
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.