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.

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.

My son has PWS and was diagnosed 3 weeks after he was born. Since then, PWSA has been there to support us, and eight years on, they are still there supporting us. They have been a lifeline for us, especially at the very beginning when we felt lost and had no idea what the future would hold.

Professionally, I have worked in the charity sector for 10 years and specialise in systems, data analysis and insight. I want to use these skills to help the association and their executive team in their work.

I am based in the North West and live in Wirral. 

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’m the VP of Global Corporate Affairs at Lottoland and have previously worked with the PWSA UK on various PR campaigns to promote the Win Win charity Lotto and Scratchcard games. Over the years, I’ve formed a strong connection with the team, and it was because of this that I used my ‘Giving Back Days’ to support and help them deliver Glow Orange during May’s awareness month.

While I don’t have a personal connection with PWS, my Group CEO, Nigel, does through his grandson, Ollie. Hearing Nigel and his wife speak about Ollie and the support they’ve received is heart-warming and has really strengthened my desire to help the charity in any way I can.

I bring with me a range of skills, including PR, government relations, campaign activation, and event delivery. I hope these skills will help support the charity’s strategy and make a meaningful impact in the coming months and years.

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 was elected as a Trustee for PWSA UK in 2020. My husband Colin and I live in Chesterfield and since our two sons, Dane and Zach, left home and got married we’ve replaced them with three French Bulldogs. We also have three grandchildren, Morgan, Hayden and Jaxson. 

Our third grandchild, Jaxson, was diagnosed with Prader-Willi syndrome a few days after his birth in June 2020. PWSA UK has been enormously supportive to my son and daughter-in-law and helped the wider family to understand PWS better. I wanted to contribute by giving my time, knowledge and experience to support and the executive team in their work.

My profession is procurement and I’m a Member of the Chartered Institute for Procurement and Supply (MCIPS). I have 25 years of procurement experience in the public and private sectors. I now run my own small business, providing procurement advice and services to small organisations. 

I’m also a non-executive director for a housing association, a Chair of Governors at our village primary school and for three years I’ve been the Chair of Trustees for a multi-academy trust which has nine secondary schools, delivering education to 11,000 pupils. This has given me knowledge and experience of governance around charitable trusts and charity law. 

I joined as a trustee of PWSA UK in October 2024 and am thrilled to be part of the team. I have worked in fundraising, largely in individual giving and mass marketing since 2010, but have recently taken other areas of fundraising under my remit including community, events and corporate.

I have two children and live in London with them and my partner. My son and youngest child was diagnosed with PWS when he was three weeks old. I wasn't familiar with PWS before that and was very thankful at the time for the information and community that I found through the PWSA. I also called the PWSA when my son was 6 months old for some advice and it was the first time I had a one to one conversation with someone else with a child with PWS, I will always be grateful for that conversation and the support I received. 

I want to ensure that the PWSA UK continues to support families that need it and my son in the future, and I am glad that I can contribute by being a member of the board.