2019

     

Just some of the things we achieved in 2019 

  • Published ‘Counting the Costs of CMV’ which shows how congenital CMV costs the UK £750m every year
  • Had over 50K website user visits and over 100K unique page views
  • Gave out over 100 awareness packs
  • Held 5 webinars reaching over 50 professionals
  • 30 midwives competed our online training
  • Supported families – through the website, phone calls, emails and social media
  • Worked with International groups to bring about change

January

Our research showed the true financial cost of CMV. This led to -

  • Live interviews and presentations on Yorkshire Television, ITV Wales, ITV Tyneside, ITV Meridian, Devon Live and BBC Teeside
  • The Report was presented to Steve Brine MP, at 10 Downing Street
  • The report was sent to the RCM, Department of Health officials, interested MPs, Royal Colleges and collaborative charity colleagues.
  • A meeting with David Linden MP - Chair of a new All Party Parliamentary Group on Premature and Sick Babies
  • An alliance with the University of Sydney, Australia who are conducting similar research
  • Articles in the Midwifery Digest

Gave a presentation to the team at Chailey Clinical Services in East Sussex

Attended the cCMV Workshop in London with a range of experts discussing the current knowledge of cmv, prevention and research needs.

February

Collaborated with Tommys charity (the largest charity funding research in to miscarriage, stillbirth and prem birth) to provide information on CMV.

Contributed information to the Congenital CMV Congress in Italy

April                                                                                                                                   

Attended, for the first time, the 7th International CMV Conference in Alabama to share our research and build up International relations.

Gave a presentation to 1st year midwifery students at John Moores University in Liverpool

May 

Article published in the Practising Midwife.

Attended Scottish Sensory Centre CMV Information Day

Meeting with Senior Policy Manager, Maternity & Neonatal, Dept of Health

June

Awareness raising on BBC South East News and BBC Radio Sussex

Attended the Cochlear Implant Centre Training Day in London

Presented at the Northern MMB Festival

Attended the St George’s Jennerosity Charity Day

Worked with The National Childbirth Trust Information Centre to include information on cmv.

July

Had an article published in PACEY – the Professional Association of Childcare and Early Years

September

Joined the APPG All Party Parliamentary Group at Westminster

Presented at the Virus Associations with Deafness Conference in Birmingham

Presented at a Professional Study Day in Watford

Presented at Sussex NHS Trust Assistants meeting

October

Commenced recruitment of three new trustees

Present at the Sepsis and Maternity Care Day in London

November

Attended and became a member of cCMV UK Advisory Board meeting

Partnering with Swansea and Cardiff Universities, University College London and Imperial College London under the NIHR London In Vitro Diagnostics Co-operative in a project to develop a rapid, low cost, human CMV diagnostic device which can rapidly detect CMV in saliva or urine.

Along the way we …

  • Supported fundraising events including :- Barcelona Marathon, 24 hour live stream, Stirling Half Marathon, London Marathon, Bristol 10K, Tough Mudder,  Belfast Marathon, Hair cuts, Folk Festival, Tower Ultra Marathon, La Sportiva Lavaredo Ultra Trail, La Sportiva Cortina Ultra Trail, Knaresborough Bed Race, St Albans Half Marathon, Triathlon, St George’s Jennerosity event, Reiigate College Community,  Porthcawl 10K, Bingo night, Cycle Endurance, Great North Run, 10x10 Dragon’s Den, Nursery fundraiser, Madeuptriathlon, Great South Run, Fulham 10K, Fundraising Ball, Fishing Competition ……
  • Collaborated with other charities - Sands, NDCS, CICS, AVUK, Child Bereavement UK, BLISS, The Elizabeth Foundation
  • Joined the Pregnancy and Baby Charities Network
  • Held 3 face to face Trustee meetings and many conference calls
  • Had support calls with our medical advisors to ensure we support families in the best possible way

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

     

Our Stories

July 2018 Our Story – Orla and Cytomegalovirus. On the 2nd July 2018 my wife Hannah went in to labour, it was unremarkable (at least as much as such a thing is) and Orla was born... Read more
September 2014 So here's our story - I'm from the UK. I fell pregnant with my first baby back in 2015, I was over the moon everything seemed to be going fine and smoothly until my 20... Read more

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