Staff
Nick Sireau
CEO & Chairman of the Trustees
Ever since Nick’s sons were diagnosed with AKU, he has been involved with the society. When it was set up in 2003, Nick became a trustee and has served as CEO since 2010. Now, as Chairman of the trustees, Nick works with the AKU Society to help set long-term goals and our overall strategy. Nick’s experience running the AKU Society and other charities means his advice is invaluable.
Nick studied History and Economics at Oxford University, before doing an MSc in Business Management in France. But his real passion for learning developed when he completed a Masters in Journalism and a PhD in the Social Psychology of Collective Behaviour, both part time in London during his work in the NGO sector. Before moving full time to AKU, Nick was founding CEO of SolarAid, an award-winning social enterprise which is the largest distributor of solar lamps in Africa.
In his spare time, Nick is a writer and a musician. His hobbies include writing action thrillers under the pen name James Grenton and making electronic music. For a bit of a change, he has also written and edited several academic books, the latest one being ‘Rare Diseases: Challenges and Opportunities for Social Entrepreneurs’. Nick has even dabbled in acting, playing one of the main roles in a French film when he was 8 years old.
Email: [email protected]
Michael Warne
Fundraising and Communications Officer
His role includes:
- Meeting the fundraising goals and objectives defined by the AKU Society
- Planning and executing projects
- Managing the internal and external communication of the charity
Michael grew up in Cambridgeshire and went on to study Politics and International Relations at the University of Exeter. His degree focussed on the issues of social and climate justice. At university, he volunteered at a student-led Social Enterprise for two years, and he went on to lead the enterprise in his final year at university.
After university, he moved back to Cambridge and undertook a placement working for a zero-waste packaging social enterprise which furthered his experience in the third sector.
Outside of work, Michael spends his spare time running and rock climbing.
Email: [email protected]
Lesley Harrison
Head of Patient Support & Welfare
Her role includes:
- Supporting all AKU patients, their families & carers in the UK
- Raising awareness of AKU and the National AKU Centre
- Working closely with the team at the National AKU Centre in Liverpool
- Identifying patients with AKU in the UK and across Europe
- Liaising and working with GPs and other medical professionals
- Where possible assisting patients with AKU in other parts of the world and signposting to local support networks
Lesley Has been working with the AKU Society since 2012. She trained as a Mental Health Nurse at Long Grove Hospital in Epsom and after staffing in a Mental Health unit in Chesterfield, she completed her post-registration General Nurse training in Leicester. For a time Lesley served in the Queen Alexandra’s Royal Naval Nursing Service where she cared for both civilian and military personnel. It was here she developed a keen interest in offshore sailing and crewed on a number of sailing expeditions in the Solent and Adventurous Sail Training Courses, including the Joint Services Med-Chase in the Eastern Atlantic. She is a qualified Day Skipper. During her time in the Navy, Lesley was given the opportunity to travel as Medical Cover on a Royal British Legion War Graves Pilgrimage to Central Italy.
After leaving the Navy, Lesley has worked professionally within the NHS and private sector in a variety of general nursing and mental health positions. Her extensive experience includes school nursing, evening/night community nursing and as a Practice Nurse in a GP surgery. She was also the Manager of two nursing homes with Granta Housing and Sue Ryder Care. Most recently, Lesley worked in the charity sector as an Advocate for Voiceability and POhWER, where she supported people with mental health problems and learning difficulties. She worked to ensure they were aware of their rights and empowered them to have a voice. She also worked as an ICAS Advocate, supporting and guiding people through the NHS Complaints Process and before joining the AKU Society in 2012 Lesley completed and was awarded her National Advocacy Qualification.
During the Covid-19 pandemic and with a desire to support the NHS with their Covid vaccination program, Lesley completed her Certificate in Return to Practice course for nursing at UCLan, passing with distinction.
Outside of work Lesley has a keen interest in horse riding and football. She qualified as a Level 1 Football Coach and helped set up and coach a local girl’s football team. She is a keen Everton supporter and attends games whenever she can. She enjoys being out in the fresh air walking her two miniature dachshunds.
She acts as an advocate for our patients ensuring all are treated fairly and their voices are heard, challenging decisions and processes where necessary
Email: [email protected]
Phone: +44(0)7586 759028
Trustees
Prof Jim Gallagher
Trustee
Professor Jim Gallagher holds the Derby Chair of Anatomy and Cell Biology at the University of Liverpool. Jim obtained his PhD from Cambridge on the metabolism of vitamin D under Eric Lawson. He undertook postdoctoral research in Herbie Fleisch’s lab in Bern on bisphosphonates, then Graham Russell’s lab in Sheffield where with Jon Beresford, he developed the first techniques to culture osteoblastic cells from human bone.
Alan Shenkin
Trustee
Alan Shenkin was educated and trained in medicine and biochemistry at the University of Glasgow and Glasgow Royal Infirmary. He held the post of Professor and Clinical Director of Clinical Chemistry and Metabolic Medicine in Liverpool when Dr Ranganath, who was working in the Department, took over the care of Robert Gregory and the Alkaptonuria Society was founded.
This has led to a long term interest in alkaptonuria, particularly in the biochemical aspects of the disease and its treatment. He has special interests in nutrition, and especially in the role of trace elements and vitamins in health and disease. He is currently the Honorary President of the British Nutrition Foundation.
Duncan Batty
Trustee
Duncan was awarded a Ph.D in Synthetic Organic Chemistry from University College London. Following Post-Doctoral Fellowships at the University of Illinois at Chicago and a CNRS ‘Poste Rouge’ at the Universite d’Orsay, Paris, he has spent most of his professional life in Pharmaceutical Research, working on a variety of disease conditions including cancer and pain.
Professor Lakshminarayan Ranganath
Trustee
Professor Ranga is a semi-retired but busy consultant in the NHS at Royal Liverpool University Hospital. He was appointed a Professor in Musculo-skeletal Biology in 2012 at the University of Liverpool. There was no NHS service available for rare disease Alkaptonuria in the UK when he developed an interest.
A patient with AKU, Robert Gregory approached Prof. Ranga to establish the AKU Society in 2003, and he remains a founding member, medical director and trustee to this day. At the time he got involved in AKU, systematic assessment of patients with this crippling disease was lacking. Exact numbers of AKU patients were unknown in UK and overseas. There was no effective treatment for AKU.
To address these issues, he established an NHS Highly Specialised Services funded National Alkaptonuria Centre (NAC), which is being carried out as a long-term observational interventional study employing off-label use of nitisinone. Prof. Ranga was the inaugural Director of the NAC. Patients in the NAC are able to access nitisinone free of charge and access to a multidisciplinary team of experts. He was also involved in carrying out a national survey that identified 81 UK, 450 European and 1000 patients worldwide. He has pioneered an assessment of AKU patients.
He co-ordinated the EC-funded DevelopAKUre research programme that involved three trials into nitisinone use in AKU. This will bring advances in AKU to all patients with AKU worldwide. In recognition of his contribution to AKU, he was awarded the inaugural 2012 RARE Champion of Hope for Medical Care and Treatment.
Tony Esmond
Trustee
Born in Pembroke, Tony worked as a nurse in Carmarthen, Brighton and Bridgend before entering senior management in NHS Wales in 1994. After leaving in 1997 for health reasons which he now attributes to AKU, he began a degree in Primary Education in 2000. Upon graduation in 2003 he obtained a teaching post at a primary school in the Vale of Glamorgan.
Sadly, Tony’s AKU escalated and he was forced to stop working in 2016. Tony now spends his retirement serving as a governor in two primary schools, organising a local choir, and enjoying the company of his six grandchildren: Olly, Chloe, Owain, Amelie, Aled and Arthur.
Jess Barnes
Trustee
Jess is a mum to a young son that has AKU and has supported the charity since his diagnosis in 2013. She has been an active fundraiser, appeared in our short films, and last year presented our very successful BBC Radio 4 charity appeal. Jess is the director of her family tech business and also works part-time for a digital agency with a background in sales and marketing. When she is not juggling work and family life Jess enjoys making art, running on the South Downs, and swimming in the sea.