CMV Action is the only UK charity offering advice and support to families affected by congenital CMV (cCMV).

Doctor comforting woman

We are supported by medical professionals and all our advice is founded on the most recent evidence- based clinical research and current practices. We raise public and professional awareness and campaign for better prevention measures and standards of care within our health service.

We work with a number of medical professionals who have an interest in cCMV and we support much needed research in this field. We aim to publicise any new CMV research findings via our website and social network pages.

Woman and child in wheelchair

We offer advice, support and friendship to anyone affected by cCMV. We are able to put families in touch with each other who may be facing similar issues or live nearby.

We advocate for families affected by cCMV and support them in ensuring that they receive the best possible service from their healthcare, education and social work providers.

Scientists researching

Research is currently under way for a CMV vaccine and it is our hope that, one day, it will become widely available. As part of our campaign we continue to stress the need for a vaccine to health professionals and policymakers by highlighting the devastating impact of CMV.

Our History

CMV Action began life as the CMV Support Group, set up Stan and Fay Courtney, after the birth of their daughter, Sian, in 1980.  When a local paediatrician suspected congenital CMV might be responsible for the seizures Sian was experiencing.  Stan and Fay began to look for information and support, and found little was available.

Having contacted “In Touch”, an organisation aimed at matching up families with the same rare condition, Stan and Fay made contact with other families affected by CMV and the CMV Support Group was born, with Professor Paul Griffiths as its patron.  As contacts from other families affected grew, it quickly became clear that CMV is not one condition but a wide spectrum from minor speech, hearing and mobility problems to major physical and learning impairment, as well as neonatal deaths and stillbirth.  Demand  for information and support continued to grow, and the group was renamed the Congenital CMV Association in 1986.  At this stage, the group but had no constitution, no committee and was funded on a shoe-string.

In 2000, Stan and Fay handed over the running of the Association to Keri Barzotelli, followed by Carmen Burton.  By 2011 it was decided that the responsibilities needed to be shared and the first Board of Trustees was elected.  A new name was needed to reflect the new organisation’s aims and CMV Action was born. Registered charity status was achieved in 2012.

As the internet opened up many new channels of communication, CMV Action has grown into the vibrant organisation it is today.  Our staff and Board of Trustees all work to limit the devastating impact of CMV for those currently affected and for future generations.   We work with medical professionals and collaborate with colleagues in the UK and globally.  We have an increasing influence in the world of congenital CMV and continue but continue to work on restricted funding, relying wholly on the generous donations received from our supporters, without whom we could not exist or continue.

Our Achievements

CMV Action is a small but growing charity. The key people, the trustees and support volunteers, are a small group working hard to raise awareness, support families and work with medical professionals. Please help us where you can. We can do more with your support.

 

Just some of the things we achieved in 2020

What a difficult year. Coronavirus has created many challenges for everyone but sadly cytomegalovirus has not gone away and we have worked hard to continue our work, just in slightly different ways.

Overall

  • Supported over 170 families – through the website, phone calls, emails and social media
  • Over 43,000 web users and over 108,000 unique page views
  • Held 4 webinars reaching over 50 professionals
  • 30 midwives competed our online training
  • Worked with International groups to bring about change
  • Enlisted two new Trustees
  • Alongside our Facebook Page we set up a Private Facebook Support Group, which now has nearly 200 members
  • Professor Asma Khalil joined CMV Action as a Medical Advisor. She is a Professor of Obstetrics and Maternal Fetal Medicine at St. George’s Hospital, University of London.
  • We continue to be supported by Dr Chrissie Jones, Associate Professor in Paediatric Infectious Diseases and Immunology at the University of Southampton within the Faculty of Medicine.
  • Held 40 Zoom meetings, with stakeholders, Trustees, etc.
  • Had support calls with our medical advisors to ensure we support families in the best possible way
  • Continued to be a member of the Northern Line – a group of medical professionals, with an expertise in CMV, who meet to discuss research opportunities and share information to improve practice. CMV Action provide the patient perspective in discussions and planniJanuary
  • Attended a meeting of the RACE-FIT steering group – Reducing Acquisition of CMV through Antenatal Education
  • Provided the parent perspective in various studies and clinical trials (PEGASUS Study and CHIPS).
  • Supported students on their dissertations on CMV, sharing research and current evidence.
  • Supported fundraising – this has been especially difficult this year as all the sporting events were cancelled.  Special thanks go to Rupert for an amazing channel swim and raising over £16,000, which will go towards the cost of updating our literature.

March

  • Published guidance on Coronavirus for pregnant women and families with children affected by CMV.

June

  • International Awareness Month. Supported and encouraged a Virtual 5K Run with other groups worldwide.
  • Held an online interview between a CMV Action Trustee and the founder of CMV Canada, sharing ideas and progress.

August

  • Attended a virtual meeting with APPG – All Party Political Group on Baby Loss, which we help to fund.

September

  • CMV Action chaired a section on the virtual course ‘An Update on Infections in Pregnancy’.
  • Recruited Clare Kelly as a volunteer to support our Treasurer In Financial Matters. Clare is a Finance Manager and member of the Association of Accounting Technicians.

October

  • Liaised with Jenny Retzler and took part in the Huddersfield University Research into cognition and behaviour in children with CMV.
  • Worked with Dr Tamsin Brown, Cambridge Community Paediatrician in her research on children with hearing loss due to CMV.
  • Recorded a podcast with our colleague organisation in the US – the National CMV Foundation.
  • Gave a presentation to colleagues in the fetal medicine team at Birmingham Women’s Hospital.

November

  • Accessed ECCI – the European Congenital Cytomegalovirus Initiative Conference in Italy and shared presentations and papers.

Many thanks also to Stephanie, Henry, Suzie, Pamela, Clair, Team Andrew, Leah, Sian, Sharon, Louis, Daisy/Amber/Oliver, Tividale football club and all those we don’t always know about.

Also, those who had a facebook fundraiser for birthday or Christmas, those who donate as a one off or as a regular donation and those who shop through Smile Amazon.

And everyone – too many to mention. 

We are so grateful to you.

We continued to collaborate with other charities – Sands, NDCS, CICS, AVUK, Child Bereavement UK, BLISS, The Elizabeth Foundation, Pregnancy and Baby Charities Network. Supported World Prematurity Day, Remember a Charity, Baby Loss Awareness Week and other relevant days.

Right now we ..

  • Are updating all our literature with much input from our medical advisers.
  • Planning our strategy for the next 3 years.
  • Researching and planning to recruit a part time community fundraiser.

Thank you to everyone who has made this happen – together we can bring about change

Who we help

Pregnant Women

Pregnant Women

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Families

Families

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Families

Working with Small Children

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Health Professionals

Health Professionals

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