2020

     

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.

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). 

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.

 

Along the way we …

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.

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

 

     

Our Stories

July 09 It was my first pregnancy and it was all rather exciting, choosing names, all the tiny little clothes, and we’d been so looking forward to having the 20-week scan, desperate to... Read more
Elliot_CMV
February 2011 This is my story of the effects of CMV and little boy Elliot.  I was 16 and pregnant, everything seemed to be going well, apart from being young and scared... Read more

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