INFORMATION AND SUPPORT FOR FAMILIES
I am the mum of three delightful children and have been involved with dsdfamilies since 2011.
As my eldest daughter grew up I was quite anxious about how to explain her biological development to her (which I didn’t really understand myself). When she was 7 or 8 I reached out to various family groups in the UK, in Europe and in the USA. As a group member I learned about how all parents share similar questions and hopes. I learned about the challenges adults still faced as a result of the lack of support in their youth. I saw patterns in the relief of new members when finding a safe space to share their story, with people who would truly understand them…
Prior to 2011 I worked as an academic and then as a business development manager. Both skillsets were really useful when a fellow parent, Laurie, and I set up dsdfamilies. In addition to my professional skills I had to learn about fundraising, and web development, and media and public engagement – and endocrinology, genetics, ethics, urology, psychology. And public speaking, and patience and diplomacy. I am still struggling with patience!
My current role in the charity is all about giving a voice to children’s, young people’s and families’ experiences and needs. These days I speak regularly with government bodies in the UK (London and Edinburgh), with the European Council, Equality offices and with academic researchers to inform their work on differences of sex development. I also speak at conferences and with the NHS, European and British professional medical societies, individual healthcare professionals and medical professionals about optimising care.
I often need to respond to journalists, trying to connect them also with other families. I love co-developing resources and finding visuals ways to explain difficult medical stuff. I enjoy being in touch with parents, old friends and new ones – and in their stories and questions I often recognise the long personal journey we too have made as a family. As dsdfamilies grows we increasingly need more and different skillsets. I really want to encourage other parents to become involved. I would be happy to mentor new volunteers and give you the confidence to find your voice.
Kindly note that I use Ellie Magritte as an alias to maintain my daughter's right to privacy.
I set up the CAH (Congenital Adrenal Hyperplasia) support group 25 years ago and have a son with this condition, so I wanted to learn as much as I could to help him and other families. Over the years I have worked closely with the medical profession (organising conferences, speaking at various events and promoting research) and as a result, I have also learnt a great deal about other conditions with similar issues. As girls with the severe form of CAH can be born with genital difference, I have naturally been keen to work closely with other support groups representing conditions which fall under the medical umbrella term: Differences of Sex Development. I was therefore extremely interested and pleased to learn about the setting up of dsdfamilies and was delighted to be asked to be a trustee of this fantastic charity. I will strive to do all I can to work with the other trustees and committee to help advance the very exciting and ambitious plans they have to promote better understanding, improved medical care and ultimately the lives of all families who are affected by these conditions.
Kate Davies RN (Child), DipHE, BSc (Hons), MSc, NMP, PGCert, PGDip Senior Lecturer in Children’s Nursing / Children’s Advanced Nurse Practitioner
I have been a qualified children's nurse since 1994, and worked in general paediatrics, paediatric ICU and neuroscience before specialising in paediatric endocrinology in 2000. During this time I have focused on advancing my education by studying for a BSc (Hons) in Psychology, an MSc in Occupational Psychology and an MSc in Professional Healthcare Research, and more recently as a Nurse Teacher and a Children’s Advanced Nurse Practitioner.
I have built a reputation internationally within paediatric endocrinology, having presented and published widely. My experience as a Clinical Nurse Specialist in Paediatric Endocrinology have led me to work with some of the world’s leading experts across several London NHS Trusts. I sub-specialised in growth and puberty, neuro-endocrine late effects of childhood brain tumours, adrenal disorders and disorders of sex development.
I am currently a Senior Lecturer in Children’s Nursing and Course Director of the PGDip / MSc Children’s Advanced Nurse Practitioner pathway at London South Bank University, and am a strong advocate for education for paediatric endocrine nurses.
I am Emeritus Professor of Paediatrics at the University of Cambridge and Honorary Consultant Paediatrician at Cambridge University Hospitals NHS Foundation Trust. My research has focused on how steroid hormones work at the molecular level and I have translated this knowledge towards a better understanding of many of the conditions which come under the umbrella of DSDs. I was a member of the team that put together the 2006 Consensus on DSD and has been active in supporting efforts to improve the diagnosis and management of DSDs, ensuring that families are seen in centres of excellence staffed by the appropriate experts. I am also a member of the British Society for Endocrinology and Diabetes DSD Special Interest Group.
I was the recipient of the Andrea Prader Prize of the European Society for Paediatric Endocrinology ( ESPE) in recognition of contributions to research and training in the specialty and the James Spence Medal of the Royal College of Paediatrics and Child Health for services to paediatrics. I am the ESPE Coordinator for the Paediatric Endocrine Training Centres in Africa where more than 100 paediatricians in 13 sub-Saharan African countries have now graduated as Fellows of the programme and are establishing specialist clinics in their own countries. In addition to diabetes, a large clinical load is DSD with the additional challenges of not having the resources enjoyed by health professionals in the UK. I am a Fellow of the Academy of Medical Sciences, a Council Member of the Learned Society of Wales and a Trustee of Newlife, the Charity for Disabled Children.
Father of two, and husband to a remarkable woman, I have been involved with dsdfamilies for over a year. Offering up my technical knowledge, over a decade of web development and technical support I help the charity achieve it's technical goals and provide support to the other trustees and volunteers.
Working in various industries including marketing, web development and currently the head of technical for a group of companies dealing with health & safety and employment law I have provided the same services and support to these as I do with dsdfamilies.
Being a part of this charity is one of my proudest moments in my career, knowing I am helping the team that help parents, children and professionals with support and information.
Susan has a background in fund management, having worked in the City of London and Wall Street on Pension funds and an award winning European Equity unit trust. After leaving full time employment to raise a family, she undertook various research and consultancy projects on financial services and business management. She has taken on a variety of voluntary roles for children's charities and organisations - including the NCT, nursery and School committees - and a local arts group.
I am an adult with Complete Androgen Insensitivity Syndrome, who was initially diagnosed in the 1970s, when open discussion and psychological support for children and families was not available.
I did not find out the full details of my diagnosis until I was in my mid-20s, following many difficult years where I was not given any support with understanding my body. I therefore really appreciate the importance of providing accurate information and a supportive environment for children with different sex development and their families.
Following my diagnosis, I made the decision to apply to medical school and retrain as a doctor. I have subsequently trained in paediatrics and psychiatry and I am now finishing my training as a Child and Adolescent Psychiatrist. I am also a Mum through adoption and have some experience of needing to share difficult information with my child – and the importance of providing honest and accurate information in an age appropriate way .
I am so pleased to be working with dsdfamilies - and I am hoping that my personal history as well as my experience of working with children and families, will help me promote the needs of children with different sex development.