My involvement with the Foundation began in 1999 following the diagnosis of my daughter with Russell Silver Syndrome. I quickly became more involved as I took on the role of Trustee for the RSS/IUGR/SGA group. I later took on the role of Deputy Chair and then in 2014 the role of Chairman.
I am married to Jenny and we have three daughters; Jessica, Chloe & Georgia.
My work responsibilities are based on Marketing & Technology for an industrial company. The main skills that I perceive are of most benefit to the CGF include business management, marketing, leadership and team working.
I have been a trustee of the CGF for 14 years since our daughter, Emily, now aged nearly 16 years was diagnosed with RSS (11p15) and we attended our first convention. Along with husband Dan, we also have a second daughter, Fran, about to turn 11. I work in children’s publishing as a foreign rights consultant, I am based from home but enjoy travelling 3-4 times per year to international trade fairs.
I have been the CGF treasurer for more than 18 years. My younger son, now 27, has MPHD. My day job is working for a food and beverage company as a member of their in-house tax team – but before that I worked at HMRC for just less than three years on the rewrite of the part of the tax legislation that relates to charities.
I started working for the CGF in May 2016. I first contacted the CGF regarding by son. Samuel was born prematurely, and was IUGR/SGA. At 4 years old he was diagnosed with Growth Hormone Deficiency.
I have two boys, Samuel (6) and Sebastian (4) and am married to Suman.
I am the mother of an adult daughter, Helen, with RSS Mupd7. I became a trustee about 10 years ago to give something back to the Foundation after receiving a lot of practical and emotional support during Helen’s first years. I work as a Financial Controller for a small company in the private sector and in my spare time I enjoy singing in a choir (any other ‘Rockies’ out there?!), playing the ukulele in a local group and playing tennis when the weather permits.
I have been a trustee for approximately 13 years. My son James is 26 and has Diastrophic Dysplasia and we have been members of the CGF since he was 12 months old. I run my own gas engineering company in Sheffield.
I have been involved with the CGF for the last seventeen years acting as both trustee and coordinator of the Sotos groups at various times. My daughter Romana was diagnosed with Sotos Syndrome at the age of eight and is now twenty-six. As a trustee, I have particular responsibility for coordinating the research activities of the charity and for child protection. After a career as a research scientist in academia and with the Ministry of Defence, I am now working part time in the Inclusion Unit of the local comprehensive school.
I have two daughters both with growth conditions. Holly, my eldest, is MPHD (Growth hormone deficient and cortisol deficient). Evie is on Growth Hormone for being born IUGR/SGA and failing to catch up by age 4. She is also treated for an under active thyroid and is primarily supplement fed.
I first found the CGF when Evie was a couple of years old and the information and support I received led me to question Hollys growth and receive her diagnosis.
We live in Oxfordshire with my husband. After a number of years of working in the NHS I left my job to join my husband in our own garage door business which we run together from our home.
My involvement with the CGF came as a direct result of having a daughter (Nancy) who has Russell Silver Syndrome. Being a member of the Child Growth Foundation gives me the support, confidence and guidance I need to ensure Nancy is receiving the best and most appropriate care possible. I decided to volunteer as Trustee as a way of demonstrating my appreciation.
As well as Nancy, who is 3, my husband Mark and I have a son Archie who is 12. Archie is obsessed with football and plays for 3 teams!! So if I’m not at a hospital appointment of some kind with Nancy then I am stood on a side-line watching Archie or sat next to him at Anfield watching LFC. I also work full-time as a Senior Operations Manager for Capita Customer Management. I work on the Tesco Mobile Partnership and in a nutshell I am currently responsible for the performance and customer service delivery of 170 (ish) people.
I have been a member of the CGF for many years after finding a leaflet at a hospital appointment when my son Tom was 5 years old. He was born weighing 3 lb 10 oz and at 12 months old had a diagnosis of assumed RSS, latterly formally confirmed with genetic testing MUPD 7.
I am a paediatric nurse specialist and have over 30 years experience working within the NHS. I am married with 2 sons, Tom aged 24 and Ed aged 20.
My sister, Romana, has Sotos syndrome and my family have been involved with the CGF for many years. I recently completed a PhD at the University of Sheffield which involved researching the cognitive and behavioural profiles associated with Sotos syndrome. I am now working as a research associate at the University of Sheffield on a project investigating the psychological aspects of Weaver syndrome and Tatton-Brown Rahman syndrome. In my spare time, I enjoy being active and regularly play football. I also play the oboe in a local wind band.
Membership & Communications Manager
I have worked for the Foundation since September 2001. Currently my role is the Membership & Parent Support Manager. I organise the annual convention, liaise with medical professionals, assist with fundraising, compile the newsletter, support members and offer support and advice via the CGF helpline and other media.
My initial involvement with the CGF began as my daughter, Georgia, who is now 20 years old has Russell Silver Syndrome, MUPD7. I am married to Nick and we have three daughters; Jessica, Chloe & Georgia.
Emma Roberts Davies
I have a 3 year old son Rhys, who has recently been diagnosed with Sotos Syndrome. I come from a science and technology background, however at the moment I am a full time mum as Rhys takes up most of my time with appointments, therapies and challenging behaviour! I attended my first CGF convention this year and it was the first time I had ever met other Sotos families. It was great to meet people going through similar things to us right now or who have older children and have gone through it before. I feel part of an extended family now and we have come away with lots of useful information. Having experienced it first hand I know how important these meetings and organisations are and I’m excited to be a part of it.
I am married to Adam and a full time Mum to three Children. Luke, Ethan & Summer.
As a family, we joined the CGF Family over four years ago. It’s a place where we can all feel normal.
In my spare part I love to bake and I can make a mean carrot cake.
Our son James is nine years old and was first diagnosed with RSS MuPD7 when he was 18 months old. He was IUGR and born at 32 weeks weighing 2lb 6oz. James had severe reflux, delayed gastric emptying, global development delay and still has a gastrostomy, which is now just for medication. We have been members of the CGF for the last eight years and would like to now try and give a little back to the charity that has helped us so much. I have over 20 years experience in marketing communications and PR in the public and third sectors. I live in Winchester with my husband Rob, James and our daughter Olivia.
Fundraising & Marketing Manager
I have recently joined the CGF as Fundraising and Marketing Manager and have ten years’ experience in the charity sector at senior management level. My passion is the development and growth of small charities and am so excited to be part of such a friendly and passionate team.
I am married to Michelle and we have one, very annoying, cat. In my spare time I am, slowly, learning to play the guitar and trying to improve my French.