Council of Management

Kate Learoyd (Acting Chair)

Kate previously worked as a solicitor and Partner at an international law firm. She has a son with PKU and is deeply committed to improving access to modern treatments and high-quality clinical support. Kate has been closely involved with our campaign work and policy issues that impact people living with PKU. She is committed to making the charity stronger while maintaining its roots within the PKU community, and is keen to involve members more closely in the running of the charity by strengthening transparency and communication.

Amisha Bagri

Amisha works in the management team of a diverse set of global businesses.  Her key focus is healthcare, where she champions investments in disruptive technologies.  Amisha is passionate about patient centred outcomes and is a powerful advocate for the treatment of rare diseases.  Amisha has a young son with DHPR, an atypical form of PKU and wants to support the diverse community of PKU patients and their care providers.

Christopher Cassidy

Chris lives in Northern Ireland and works in retail management.  He has a young son with PKU.  Chris has been extensively involved in campaigning for equal access to sapropterin and improved treatment and care for people with PKU in Northern Ireland.  In joining the Council of Management, Chris wants to improve the charity’s impact in Northern Ireland and other regions of the UK

Tom Chimiak

Tom is an award-winning filmmaker and senior lecturer in filmmaking at Leeds Arts University. He has PKU, delivered NSPKU and ESPKU presentations and worked on various PKU events / video work to further the community voice. He is very keen to develop the community engagement further and increasing the visibility of PKU.

Caroline Graham 

Caroline is a graphic designer who has worked in advertising and design consultancy in London. She is Scottish and lives in England, and is the mother of two grown-up children with PKU. Caroline has been involved in campaigning for access to new treatments for over 20 years, building strong relationships with MPs and decision makers. She has also played an active role in NSPKU, reaching out to people living in Northern Ireland and Scotland and helping to build a strong support network across the UK. She has organised numerous events in Westminster and Holyrood to encourage MPs to support NSPKU campaigns. Caroline firmly believes that people living with PKU deserve the best possible treatment, and that working together is the key to creating meaningful change.

Professor Anita MacDonald OBE

Anita is Consultant Dietitian in Inherited Metabolic Disorders at Birmingham Children’s Hospital, and an Honorary Professor in Dietetics at Plymouth University. She is a Fellow of the RCPCH. Anita is actively involved in all aspects of metabolic disease nutritional research, as well as teaching and development in this discipline. She has extensive research experience and is a co-author of “The complete European guidelines on phenylketonuria: diagnosis and treatment”.

Paul McKeller

Paul lives in Scotland and has PKU. He works in adult social care, supporting individuals to live independently and achieve their full potential. Drawing on both his professional experience and his own lived experience of PKU, Paul is passionate about supporting people with PKU to realise their full potential and ensuring their voices are heard in the development of services and support. Paul will take the lead on safeguarding within NSPKU and is also a member of the Medical Advisory Panel, helping to strengthen the charity’s work across both patient support and clinical engagement.

Sarah Youssefi

Sarah is a corporate finance lawyer and has PKU. She is originally from the USA and works in London in corporate law, advising businesses and financial institutions on complex financial and transactional matters. Sarah is passionate about raising awareness of the condition and supporting the PKU community to ensure people living with PKU can thrive in all aspects of life. Sarah will bring valuable professional insight to the Council and will support NSPKU in strengthening its work across advocacy, governance and engagement with the wider PKU community.

Sara Noble-Nesbitt

Sara is an engineering management professional who has experience working in industry and higher education. She is currently the ESPKU rep for the society, which gives a forum to collectively share experiences from different societies and campaign on common issues. She was introduced to the PKU world after meeting her husband Duncan and has attended NSPKU events over the past 25 years. Having seen the advances in dietary management and treatment during that time, she is keen that all with PKU are able to access and benefit from these and live their lives to the full.

John Skidmore

John was a Corporate Director including Director of Adult Social Services until recently retiring after 41 years in Local Government. He has served as a Director on a number of charity Boards and been involved with the NHS. John has a daughter with PKU. John leads our work to strengthen the charity, including governance and how we conduct our business. He is also working on our research strategy which has a national and international focus.

Professor Emma Vardy

Emma lives and works in the north-west of England and is mum to a daughter with PKU.  She is a doctor working in the NHS and an Honorary Professor of Geriatric Medicine. She has extensive research experience in the care of older people and has an interest in the health of people with PKU as they age.  She is keen to ensure that research priorities are identified based on what matters most to people with PKU, and to ensure that clinical guidance is shaped by the lived experience of people with PKU.

Staff

Margaret Butcher (Bookkeeper)

Margaret is an Accountant based in Lancashire with many years of experience. She is now looking after the finances for NSPKU where she reports to our senior team.

Suzanne Ford (Dietitian Advisor)

Suzanne is a metabolic dietitian working for North Bristol NHS Trust Adult Metabolic service. She also works for NSPKU where she brings her expertise to dietary resource production; advocacy; media appearances, awareness raising and industry liaison.

Alison Green (Charity Coordinator)

Alison is a Business Support/Finance Coordinator in Local Authority where she has worked for almost 40 years. She also works for NSPKU and supports the day to day running of the Charity. Alison has a daughter with PKU.

Medical Advisory Panel (MAP)

Dr Charlotte Dawson

Consultant in Metabolic Medicine, Birmingham. At QEH in Birmingham Charlotte provides clinics, sees inpatients, teaches and researches and she supports services outside of Birmingham as well.

Gemma Hack

Gemma is a Paediatric Metabolic Nurse Specialist at Evelina London Children’s Hospital. She supports inpatients and outpatients with metabolic conditions including those diagnosed with PKU through newborn screening. Gemma has a keen interest in PKU and the transition of the young people into Adult Metabolic services.

Mel Hill

Specialist Dietitian for IMD, Sheffield. Mel has been working in Metabolic Dietetics for the last 5 years and has spoken at national conferences, led workshops and published research.

Dr Hugh Lemonde

Hugh is a Consultant in the metabolic service at Evelina Children’s Hospital.

Professor Anita MacDonald OBE

Anita is Consultant Dietitian in Inherited Metabolic Disorders at Birmingham Children’s Hospital, and an Honorary Professor in Dietetics at Plymouth University. She is a Fellow of the RCPCH. Anita is actively involved in all aspects of metabolic disease nutritional research, as well as teaching and development in this discipline. She has extensive research experience and is a co-author of “The complete European guidelines on phenylketonuria: diagnosis and treatment”.

Dr Gisela Wilcox

Gisela is Consultant in Adult Inherited Metabolic Disorders at Salford Royal NHS Foundation Trust. At Salford Royal she is involved in clinics, inpatient work, service development, education and clinical research.