Our organisation is run by our Trustees. Hard working and unpaid, they strive for CMV awareness every day....
Caroline Star - Chair
I’m Caroline and I live in London. My daughter was diagnosed with CMV at 8 weeks old after she failed her newborn hearing test. Whilst she didn’t have anything obviously wrong with her at birth, further scans revealed that the virus had caused a lot of changes in her brain.
As I read more about CMV over coming months I just couldn’t believe how common it is, how devestating the consequences can be and yet how little is done to educate pregnant women about prevention. I remember only too well how terrifying those early months were after diagnosis and I became a Trustee of CMV Action to try and make sure that other parents don’t have to go through the same thing.
The evidence shows clearly that CMV could be prevented. A vaccine could be available in a decade and we could wipe out this avoidable tragedy in a generation. I bring a professional background as a policy maker - I have previously worked as a senior civil servant and led on children's policy in the Prime Minister's Strategy Unit.
I hope that I can use this experience to drive some exciting changes over coming years.
Tom Kelman - Treasurer
I am a City based Chartered Accountant with over 27 years experience. My most recent experience was as the Director of Finance and Corporate Resources for almost eight years at AAT, a widely recognised not for profit professional membership body. Prior to that I held the role as the Finance Director at Gissings, a fast growing Private Group.
I also have commercial experience as a Director responsible for creating and developing a professional client facing practice within the Gissings Group during my 16 years there. I qualified as a Chartered Acountant with Thomson McLintock which later became part of KPMG.
My darling granddaughter was born with CMV. She is severely affected but is a strong little lady with the most amazing smile.
In my work as a Teacher of the Deaf I was barely aware of CMV, let alone the possible consequences. How can such a common virus, harmless to most people, be so devastating to a developing baby.
I found it unbelievable that so little was known of CMV – my colleagues, audiologists, doctors, nurses, midwives, health visitors, social workers, friends and family – no one had heard of it.
I want to be involved in raising awareness of CMV and campaigning for better preventative measures until a vaccine becomes available.
As a Trustee, I have given talks on CMV and the charity to Teachers of the Deaf, the Ear Foundation, to local Rotary clubs, Golf Club, Lions, etc. which has tied in with fundraising. I have attended NICE meetings, fundraising events and the lovely family parties.
I am also a support volunteer, particularly giving advice on hearing loss and education issues. I help with updating the CMV Action website and Facebook Page. and co ordinating the fundraising. I am generally willing to do what I can - never a dull moment as the charity is going from strength to strength.
Through CMV Action we can bring about change.
I have four boys, the youngest two are twins, and one of the twins was diagnosed with CMV at the age of 1. He had failed his newborn hearing test and had progressive loss.
It was only after being referred for Cochlear Implants that he had a MRI which revealed scarring on his brain. It was then that his Guthrie chart was tested and he was diagnosed with Congenital CMV.
It was at this point that we started to find out all we could about CMV and realized how little was known and how much uncertainty lay ahead.
The best information and help we could find was talking to other parents who had children affected by CMV.
I have been involved with CMV Action for about four years as a parent supporter. My son, Louis, had congenital CMV and is now 16 years old. He was not diagnosed until he was three so I am motivated to increase awareness. My background is in criminal law and I now have a variety of part time jobs.
So far, I have organised the recent CMV Day at the Elizabeth Foundation in Portsmouth and have talked at other events such as the Ear Foundation Day in London.
I have been involved in getting support and preparing some of the stakeholder letters for the ‘We Need To Talk About CMV’ report.
I assist on legal issues, such as Data Protection and have written the volunteer policy, the protocol for support requests and have trained new volunteers.
Caroline and I worked together on the selection and interviews for the Project Manager role.
I have really enjoyed working with Caroline and the other trustees. They are all highly motivated and professional and are combining their trustee roles with looking after children and grandchildren who have been affected by CMV.
I am looking forward to being a Trustee of this fantastic charity.