Council of Management

Andrew Thompson, Chair

Andrew works as Chief Executive of a charity in his professional life and brings years of expertise in charity management to his role as our Chair. He has a young son with PKU.  As Chair, Andrew wants to grow the charity, so we can do more to help people with PKU and their families.

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.

Julie Cardy

Julie Cardy, Conference Organiser

Julie is our Conference and Events manager as well as being a busy mum. She has been attending NSPKU events since her childhood and now brings her perspective and understanding of living with PKU to organising conferences which best meet the needs of our members.

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 and has also worked in advertising.  She is also the mum to two grown up children with PKU. Caroline is passionate about improving the lives of people with PKU and their families.  Caroline works on advocacy, campaigns and visual communications.

Kate Learoyd, Secretary

Kate worked as a solicitor and Partner in an international law firm. Kate has a son with PKU and has been very committed to improving access to modern treatments and good clinical support.  She manages our campaign work and considers policy issues which will affect people with PKU. As Secretary, Kate wishes to involve our members more in the running of our charity by improving transparency and communication.

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”.

Duncan Noble-Nesbitt

The Council of Management recommends that Duncan Noble-Nesbitt is re-elected as a Member of the Council of Management.
 
Duncan is a Regional Nurse Manager/Specialist Nurse Practitioner, specialising in Community Public Health Nursing (Occupational Health). Duncan has PKU and is a pioneering advocate for lifelong treatment for PKU. Duncan is a member of the Medical Advisory Panel and provides representation of patient voices. Duncan has more recently joined the Executive Board of the ESPKU after many years as the ESPKU delegate representative for NSPKU.

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

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)

Barbara Cochrane

Barbara is a Metabolic Dietitian at NHS Greater Glasgow and Clyde with years of experience of treating children with PKU. She also organises a yearly outward bound trip for children and young people with PKU.

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.