About the Team

I joined PWSA UK in April 2023 and have 30 years' experience working in the charity sector in a range of management roles. I am passionate about making a difference for everyone in the PWS community and always love to hear from you. 

Before joining PWSA UK I was CEO of an endowed charity in Surrey providing residential care, supported housing, community buildings, and grants for organisations and individuals. I led the charity for almost 15 years, developing new services as well as ensuring the long-term financial stability of the organisation

I joined the board of IPWSO (International Prader Willi Syndrome Organisation) in June 2025. 

I am also Vice Chair of Co-Op Homes managing and supporting social housing.

I previously worked for the British Heart Foundation, heading up the UK care and rehabilitation programs. During this time, I developed the BHF heart nurse programme to provide specialist care across the UK for people with heart failure. Prior to this, I held a range of management roles with the Age Concern federation supporting the governance of local organisations and the development of quality assurance for information and advice services. I have also held various trustee positions on local, national, and international charities. I have a BA in Psychology and a master's degree in Charity Management from City University. 

I am married with two grown up children and live in Surrey with my border terrier. In my spare time, you’ll find me rowing on the River Thames or running along the tow path. 

I manage the PWS Specialist Advisors team PWSA UK, where I oversee our advisors, develop services to meet community needs, and act as safeguarding lead. With eight years at the Association, professional experience at Great Ormond Street Hospital, and lived experience of Prader-Willi Syndrome, I bring a broad knowledge and understanding of the condition to my work.

My approach is always person-centred, and I’m passionate about making sure everyone living with PWS has the same opportunities as those without it.

I joined PWSA UK in August 2018 as a Support and Training Officer. I have a background in the voluntary sector, working for Home-Start UK for many years supporting families and children. I then spent a brief period working for my local authority, providing training in Positive Behaviour Support for Residential Care Providers. I really enjoy all aspects of my role with PWSA UK, from talking to families on the phone, delivering training, meeting families at events and clinics as well as recruiting and supporting volunteers. I’m so glad I feel very ‘at home’ both within the organisation and as part of the wider PWS family.

I joined PWSA UK in July 2021 and feel very fortunate to be part of such a dedicated and supportive team. As a Specialist Advisor, I work with families, professionals, and services to share knowledge, guidance, and encouragement at every stage of life with Prader-Willi Syndrome.

I am also a parent – my son is in his 40’s and has PWS – and I draw on both my lived experience and professional training to offer practical advice, empathy, and understanding. My background includes early years education, fostering, and respite care, which has given me a strong foundation in supporting families and individuals with complex needs.

I hold a BA (Hons) in Childhood Studies, am a qualified Makaton   Tutor, completed a course in SEN law and regularly update my safeguarding training. I also hold a Certificate in Assessing, which I previously used to assess NVQs in early years settings, residential homes, and children’s services.

Within PWSA UK, I am the lead for the new diagnosis service, supporting families as they begin their journey with PWS. I am passionate about ensuring that families feel welcomed, reassured, and empowered with the right information and support.

I look forward to meeting many of you, whether online or face-to-face, and to walking alongside you in the challenges and celebrations that life with PWS brings.

Since 1986, I have had the privilege of working with and supporting adults with PWS. I am certain that I am who I am today because of the many incredible people with PWS I have supported and cared for, as well as their wonderful families.

During my time with a national care provider, I witnessed the service grow from supporting just 3 people in 1986 to almost 100 by the time I left in 2022. As part of the leadership team, I played a central role in developing, maintaining, and improving the standards of PWS care, while also keeping up to date with the latest knowledge through national and international conferences and training events. Despite decades of experience, I have always known that there is no end to learning about PWS - every person, every family, and every new piece of research brings fresh insights.

Now, in my role with PWSA UK, I am focusing on how the charity can best influence and support residential settings for adults with PWS. My aim is to help ensure that people with PWS receive the highest possible standards of care and the best quality of life - something that I know matters deeply to individuals, families, and the wider community. Joining PWSA UK feels like the icing on the cake of my professional journey.

Away from work, I enjoy spending time with my family, walking our dog Rosie not to mention a lifelong love of sport, music, film, and TV.

I'm passionate about making life better for people with Prader-Willi syndrome, something that I have a very personal stake in, as mum of a young person with PWS. 

My goal as engagement manager is to make sure that we're shouting loud and clear about what people with PWS and their families need, getting that message to those with the power to change things. I'm on a mission to listen closely to people with PWS and those who provide care for them, to make sure we're providing the highest quality services, resources and information to meet their needs.

I have 25 years' experience in media and communications, specialising in digital strategy and community engagement. 20 of those were spent at the BBC, working across radio, TV, social media and digital content. I'm excited to be able to use my skills and experience for a goal I care about so deeply. I also served on the PWSA trustee board for 10 years before starting this role, so I know a bit about the association too.

I'm lucky enough to know lots of you already but I love meeting new members of our community. Please reach out and let me know how life with PWS is for you. I'd love to and hear your ideas and thoughts, or just say hello!