Nick Sireau, PhD, is the CEO and Chair of Trustees at the AKU Society, a patient group that helps people with AKU, a rare genetic disease affecting both his children. The AKU Society and Nick are the winners of the 2021 Members Award by EURORDIS (the European Organisation of Rare Diseases) because of their work on successfully developing a new treatment for AKU. Nick is co-founder and Chair of Findacure, an organisation that helps all rare disease patient groups. He is the editor of ‘Rare Diseases: Challenges and Opportunities for Social Entrepreneurs’ (Greenleaf 2013) and of the 'Patient Group Handbook: A Practical Guide for Research and Drug Development' (Findacure 2016). Nick is co-founder and Chair of Orchard OCD, a medical charity that funds research into obsessive-compulsive disorder (OCD), a common yet debilitating mental health condition. He is also co-founder of Sirgartan Therapeutics, a biotech that focuses on new treatments for OCD. Nick has a BA from Oxford University, an MSc in management studies from the Lyon Graduate School of Business and a PhD in social psychology from City University. He is a fellow of the Ashoka Fellowship of Social Entrepreneurs.
Jean-Yves Sireau is the founder and CEO of Deriv, an online trading broker founded in 1999. The company has become one of the world’s largest online brokers, offering a wide range of CFD and other derivative contracts on forex, stocks, and synthetic indices to over a million clients worldwide. Now a global company, Deriv Group Ltd has more than 580 employees across 10 offices worldwide. In 1997, Jean-Yves started working on the systems and algorithms that became the foundation of Deriv. Today, after more than 20 years and with over USD 9.9 billion in turnover, Deriv Group continues on its journey of innovation to give clients access to a wide range of contracts, markets, and apps to trade.
Professor George Bou-Gharios obtained his PhD at Charing Cross and Westminster Medical School (Imperial College London) in 1989 having worked on enzyme replacement of lysosomal storage diseases. He learnt his genetic skills at MD Anderson, TX, USA, generating cell-specific mouse models. He returned to the Medical Research Council in London and worked on exon skipping in muscle to treat Duchenne muscular dystrophy. He was appointed professor of matrix biology in 2013 at the Institute of Ageing and Chronic Disease, University of Liverpool. He was asked by Profs Ranganath and Gallagher to generate a conditional mouse for AKU which started his interest in the disease.
Professor Lakshminarayan Ranganath is a consultant at the Royal Liverpool University Hospital in the UK. He established an NHS Highly Specialised Services funded National Alkaptonuria Centre (NAC), employing off-label use of nitisinone, bringing together a multidisciplinary team of specialists to deliver a single-stop care at annual review for AKU patients in the UK. He is the inaugural Director of the NAC. Patients in the NAC are able to access nitisinone free of charge. Prof Ranganath has carried out a national survey that identified 81 UK, 450 European and 1000 patients worldwide. He has pioneered an assessment of AKU patients. He is the chief investigator who co-ordinated DevelopAKUre, a European Union-funded international research programme, which involved three studies in AKU, including a 4-year randomised nitisinone clinical trial, called SONIA 2, in alkaptonuria. He has authored more than 200 peer-reviewed publications and supported over 10 research students (PhD and MD) into AKU.
Professor Jim Gallagher is an Emeritus Professor at the University of Liverpool. He held the Derby Chair of Anatomy and Cell Biology at Liverpool from 2008-2020 and is Past-President of the Bone Research Society, UK and a Fellow of the American Society for Bone and Mineral Research. Jim undertook his PhD with Eric Lawson in Cambridge, where they showed that 1,25(OH)2D3 is necessary and sufficient to cure bone lesions in rachitic rats. His first post-doc was working with Herbie Fleisch on the effects of bisphosphonates on osteoblasts. He returned to the UK to Graham Russell’s lab, where he developed the first system to culture human osteoblasts with Jon Beresford.
His group in Liverpool cloned the human P2Y2 receptor and pioneered the investigation of purinergic signalling in bone and skin. Jim has supervised over 40 PhD students, several of whom hold academic positions at UK and international universities including two chairs. In recent years, he has worked with LakshminarayanRanganath on the mechanism of arthropathy in the rare genetic disease alkaptonuria and they have identified an effective therapeutic agent, nitisinone, which was approved by the EMA in 2020. Morphological studies on the severe osteoarticular phenotype in alkaptonuria, in collaboration with Alan Boyde, have revealed new mechanisms of joint destruction that are also observed in more common osteoarthritis. Jim collaborated with DaisyBeck Productions on the acclaimed Channel 5 documentary “Body Donors”, which won a Royal Television Society Award.