Trustees

My son Freddie was diagnosed only 8 days into life. We were then unexpectedly thrust into a new existence, dominated by the needs and challenges of PWS. 

PWS is not just a disability, it is a lifestyle - one which is not only challenging for the person but also for the families and medical/care community. 

Without the support and education provided by the PWSA, we wouldn’t be where we are today. 

By joining the PWSA, I hope to give back and continue the selfless work of those before me. 

Being part of a team dedicated to support, advocacy and treatment for so many is a beacon of hope. 

My professional background includes sales, marketing and project management.

I’m very happy to have been accepted onto the trustee board of the PWSA.

My daughter, Rose, was diagnosed with PWS when she was born. I remember looking down at her and feeling utterly lost, wondering if she would ever walk, talk or even open her eyes. Over the next ten years she surpassed every expectation we ever had of her and has blossomed into a happy, intelligent and thoroughly lovely young person.

My work background is in the media. I have worked in radio, TV and social media and as a digital content producer for the BBC. I’m pleased to be able to use my skills in social media, editorial strategy and website management in my trustee work with the association.

My son Clive has PWS, and keeps us busy along with his brother.  Clive is very sociable, determined and willful. 

My professional background is as a medical doctor (cardiologist) with lots of experience in clinical trials and research, and in a previous life, as an engineer.  I have led the research working group and we have recently brought international randomised controlled trials for PWS to the UK.   

Although drug trials form a key part of PWS research, behavioural techniques and basic genetic science also hold promise to improve the lives of PWS people and families.

Evelien gained her medical degree at University Leiden in The Netherlands in 1991. She was awarded a PhD on the effect of pubertal hormones on growth and growth hormone secretion. She was trained in Paediatric Endocrinology at Erasmus Medical Centre - Sophia Children’s Hospital in Rotterdam, The Netherlands, and University College London and Great Ormond Street Hospital. Simultaneously, she worked at the MRC National Institute for Medical Research in London to do research in growth hormone, growth and pituitary disease.

She is a Reader in The Centre for Endocrinology at the William Harvey Research Centre at Queen Mary University London and a Consultant Paediatric Endocrinologist at Royal London Hospital at Barts Health NHS Trust since 2013. As a paediatric endocrinologist, she sees children with hormone conditions often due to rare diseases, and therefore sees children with abnormalities of growth, puberty, thyroid, bone etc. She started a multidisciplinary clinic for PWS in 2016 comprising of a dietitian, psychologist, sleep specialist, paediatric endocrinologist and endocrine nurse.

Her main interests are PWS, growth, bone and pituitary conditions, and type 2 diabetes in children.

She is interested in improving care and developing new treatments for PWS and other rare diseases and is a Principal Investigator for many clinical research trials in Paediatric Endocrinology and Diabetes, and is the Co-ordinating Investigator for Soleno’s Destiny trial.

PWSA were just random initials for me until my first grandson Max was born in August 2014 with PWS. Like most people, I went straight onto the internet to find out more about the syndrome and this is when I first became aware of the work and support that PWSA offer families affected. I called them and the person on the end of the line was supportive and informative. It was great to know that there was help at hand. 

This led me to decide to get more involved in helping promote the work of PWSA in any way I could by becoming a Trustee in 2016. My background is in education management and people development. I have been an executive coach since 2005 and have run my own coaching business since 2008 both in Japan and now the UK.

In addition to being a member of our board of trustees, Ian has also held the post of Secretary. His daughter Eve has PWS. Ian supports the charity in many ways and has even run the Virgin London Marathon on our behalf.

I joined the Board of Trustees in November 2023 following my retirement as CEO of PWSA UK. I felt very privileged to serve as CEO for 11 years and I am delighted to remain part of PWSA UK and the PWS community as a trustee.



I have worked within the charitable sector for very many years in both regional and national charities. I have a background in fundraising and governance, and am a member of the Chartered Institute of Fundraising. I am also a trustee of a special needs nursery in Staffordshire which has, from time to time, supported children with PWS. 

I have seven grandchildren who keep me busy in retirement and have just begun a new hobby of beekeeping!

I joined as a trustee of PWSA in 2023. My younger brother has PWS and I know from first-hand experience how important it was for our family to have a trusted association like the PWSA to provide information and guidance. I am from New Zealand, where all my family including my brother continue to live, so I also value working with the PWSA as a way to maintain a connection with the Prader-Willi community and look forward to meeting more members. I am keen to be in touch with PWSA members to understand how the PWSA has helped them and how it can better help them.

In my professional life, I am a barrister who specialises in public law and human rights. I am based in London with my partner.

I first joined the Association in 1992 when our 3 month-old-child, Christopher, was diagnosed with PWS. I have learnt - and am still learning - about PWS and its impact on all who are touched by it, through the sharing of experiences with people I have met along the way. 

Christopher currently lives in a residential setting and he is a member of the PWSA OWL (Our Way of Life) Focus Group.

Our family responsibilities have altered and new adjustments have had to be made but PWS remains a part of daily life.

The complexities of the transition to adulthood, along with the continuing needs of both adults with PWS and those who support them, led me to offer to become a Trustee in November 2016.

I am particularly interested in the provision of appropriate care and support for our PWS adult community.