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).
Published guidance on Coronavirus for pregnant women and families with children affected by CMV.
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.
Attended a virtual meeting with APPG – All Party Political Group on Baby Loss, which we help to fund.
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.
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.
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