Trustees

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. 

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.

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.

My daughter, Esther, was born in 1978 and diagnosed with PWS in 1983, when I joined the fledgling PWSA UK. I joined the Trustee Board a couple of years later and from early 1990 became a member of the staff team, where I was known as Jackie Waters. I had a variety of roles within the Association, including fundraising and training, but my main one was to provide support and information to all those affected by PWS. I retired at the end of 2018.

I served twice on the Trustee Board of the International Prader-Willi Syndrome Organisation (IPWSO), and was parent delegate to IPWSO at other times.

In the years since my daughter was born, I have seen, and been involved in, a much greater understanding of the management and treatment of the syndrome. Now, joining the Trustee Board in 2025, I look forward to helping take that understanding even further forward.

Since my retirement, I have been a member of Derby u3a, serving as Chair of that charitable organisation from 2021-24. I remain on the Committee as Vice-Chair. I also volunteer one morning a week at my local community-managed library.

My daughter is now 47, and is happily settled in a PWS specific residential home in Kettering, where she has lived since 2021. 

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 am a paediatric dietitian at the Royal Alexandra Children's Hospital and honorary senior clinical lecture at Brighton Sussex Medical School. I have worked within the Brighton PWS multidisciplinary team clinic for almost 20 years. Over this period, I have had the privilege of meeting and supporting many children and young people with PWS and their families. This role has allowed me to put into practice the theoretical principles of nutritional management while also learning from the lived experiences of people with PWS and their families. These experiences have reinforced the importance of combining evidence-based practice with practical strategies that support day-to-day living.

I joined the Board of Trustees in 2026, having worked closely with the PWSA for many years and supported a range of its events and initiatives. I am delighted to have the opportunity to continue supporting the work of the charity.

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. 

I was delighted to be elected a Trustee of PWSA UK in October 2026. I have a very personal connection and growing understanding of PWS, as I have a grandson with the condition. This gives an appreciation of the very limited understanding amongst the general population, often including healthcare, care and education professionals who have not experienced previous exposure or targeted PWS training, and also the support and access to a community that families need following diagnosis, and on an ongoing basis thereafter. I am keen to support the various needs of the PWS community where my skills and experience can help.

My full-time Executive career comprised more than 40 years in various financial services roles, most recently as Chief Customer Officer and Deputy CEO of a Regional Building Society. Since retiring from that role, I have enjoyed my roles as a Non-Executive Director of a mutual affordable private Healthcare business, a Trustee Director of a Pensions Trust and, until very recently, a Trustee Director of a Multi Academy Trust specialising in Special Educational Needs.

Interests beyond my family tend to centre around rugby union (having previously played, coached, been an administrator, this now comprises "walking rugby"), and a desire for continuous personal development.

I will be looking to utilise my varied commercial experience, particularly in areas such as strategy, finance and member service and engagement, to complement the broader existing skill base of the Trustee group.

Robin is dad to Clive who has PWS. Robin continues to chair PWSA UK Medical Advisory and Research Committee and works to bring clinical trials to UK

Anne is a grandparent to Max, who was born in 2014. With a background in education management and people development, Anne has provided invaluable support to PWSA UK over the years.

Danny is a serving officer in the Armed Forces and dad to Albert, who has PWS. He chaired PWSA UK from 2018 to 2026 and has supported the charity for many years, including through various fundraising challenges. He continues to support the association across a range of projects.

Anne is a Consultant Paediatrician specialising in child development with many years’ experience of caring for people with PWS. She continues to support PWSA UK as a member of the Medical Advisory and Research Committee.

Ian is dad to Eve a young woman with PWS. Ian continues to support PWSA UK and is a member of the Services Information and Training Committee. 

Tony Holland trained in Medicine at University College and University College Hospital, London, qualifying in 1973. After some years in General Medicine he trained in Psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. From 1992 to 2002 he held a University Lecturer’s post in the Section of Developmental Psychiatry in the University of Cambridge, and in 2002 was awarded the Health Foundation Chair in Learning Disability, establishing the Cambridge Intellectual and Developmental Disabilities Research Group. This multidisciplinary group undertakes a broad range of research relevant to people with intellectual disabilities. His specific interests include the eating, behavioural and mental health problems associated with Prader Willi Syndrome; the relationship between Down’s syndrome and Alzheimer’s disease, and also clinical/legal issues relevant to the needs of people with intellectual disabilities. In 2010 he was elected a Fellow of the Academy of Medical Sciences and was awarded a CBE by the Queen in 2015.