INFORMATION AND SUPPORT FOR FAMILIES

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Our Trustees

Julie Alderson

I am a clinical psychologist and I have worked with children and families for almost 25 years. I first learned about sex development when I worked with young adults and teenagers in a gynaecology service. My job was to help some people with their feelings and thoughts about their diagnosis or treatment. I also helped parents whenever I could. I was lucky to be invited to the AIS support group around that time. The group helped me talk to young women, whom had grown up with partial or complete AIS for a research project. I travelled to their homes, talked for a while and then went back a few months later after some thinking.

When I moved to the South West I couldn't find funding to work in a similar service so I worked in a children's cancer team and then in a hospice. After a while the doctors at Bristol Royal Hospital for Children arranged for a psychologist to be part of their work with children and families who see endocrinologists (hormone doctors) and urologists (surgeons) I still work with the Bristol team and I help other psychologists in their work too.

I have always wanted to get people together to learn from each other, especially after seeing how that helped some families involved with AISSG-UK the support group I mentioned, so I am pleased to be helping with dsdfamilies.


ELLIE MAGRITTE

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.


Sue Elford

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

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.


Ieuan Hughes

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.