The DMD Hub was developed as a collaboration between Duchenne UK and leading neuromuscular clinicians based at John Walton Muscular Dystrophy Research Centre in Newcastle and Great Ormond Street Hospital in London.
Duchenne UK was founded by two parents, Alex Johnson and Emily Reuben, after their sons were diagnosed with Duchenne muscular dystrophy. They joined together to form Duchenne UK in 2016.
As the leading Duchenne muscular dystrophy (DMD) charity in the UK, we aim to end Duchenne's devastating impact. We connect scientists, the pharmaceutical industry, the NHS and families to advance and accelerate medical research, while bringing everyone affected by DMD the care and support they need.
Launched in 2014, the John Walton Muscular Dystrophy Research Centre brings together and consolidates Newcastle’s world-leading research and care for neuromuscular diseases. The team is based at the Institute of Genetic Medicine, Newcastle University. The centre is structured around five key activities: clinical care, clinical research, diagnostics, basic research and strategic partnerships and networking.
GOSH is an international centre of excellence in child healthcare. There are 63 clinical specialities at GOSH, including the Neuromuscular Clinic. As well as excelling in health services, GOSH collaborates with the Institute of Child Heath, University of London and international partners to carry out world-class research, benefitting patients.
Emma Heslop is the DMD Hub manager. Emma is based at the John Walton Muscular Dystrophy Research Centre, in a position funded by Duchenne UK. Emma trained as a biological anthropologist at Durham University and was awarded an MSc (Research) in 2005. She has been part of the John Walton Muscular Dystrophy Research Centre at Newcastle University since October 2006, when she joined the TREAT-NMD Neuromuscular network of excellence, as an assistant project manager.
Emily is the co-founder and joint CEO of Duchenne UK. Emily set up Duchenne Children’s Trust in 2012 after her son was diagnosed with Duchenne muscular dystrophy. Before that she was a reporter for Channel 4 News and CNN international. Emily has advocated on behalf of patients around the world. She’s spoken many times in the Houses of Parliament. Emily is a member of the ABPI’s eight-person Patient Advisory Council, and sits on the Steering Group for the ABPI’s Patient Organisation Forum. She is also a member of the MHRA’s Patient Group Consultative Forum, as well as the Steering Group for the regulator’s new Innovative Licensing and Access Pathway (ILAP
Alex is the co-founder and joint CEO of Duchenne UK. Alex founded the charity Joining Jack with her husband, ex-rugby league player Andy Johnson, following their son Jack’s diagnosis with DMD in 2011. Alex is a board member of the World Duchenne Organisation (WDO) and has helped organise international awareness events like the World Duchenne Awareness Day. Alex has represented the Duchenne community by speaking at international conferences around the world, workshops and meetings with the FDA, EMA, MHRA, NICE and at the Houses of Parliament. Alex was honoured to join the steering committee that helped organise a workshop with the EMA on exon skipping. Following the meeting the steering committee published an article in the Lancet. Alex completed training at a Eurordis summer school to become a trained patient advocate and is also a member of the MHRA patient group consultative forum.
Professor Straub is the Deputy Dean, Harold Macmillan Professor of Medicine and Professor of Neuromuscular Genetics at the Institute of Translational and Clinical Research at Newcastle University. One of Professor Straub’s main interests in muscle diseases is around translational research. He was the co-founder of the EU FP6 funded network of excellence for genetic neuromuscular diseases, TREAT-NMD, which he coordinated together with Kate Bushby.
Dr Guglieri is a Senior Clinical Lecturer and Honorary Consultant at Newcastle University. She leads the clinical research team which is currently involved in over 30 studies over the past 5 years. Duchenne UK collaborated with 5 patient organisations to award a 5-year lectureship to Dr Guglieri in 2015.
Professor Muntoni is a Paediatric Neurologist with an interest in clinical, pathological and molecule aspects of neuromuscular disorders. He is the director of the Dubowitz Neuromuscular Centre, a leading clinical and research institution for children affected by neuromuscular disorders.
Dr Childs has been working as a Consultant Paediatric Neurologist in Leeds since 2001 when she became the Lead for Children’s Neuromuscular Services. She is committed to delivering high-quality care to all patients with neuromuscular disorders in Yorkshire. Her clinical research interests include MR imaging and rare disease phenotyping, although her predominant research involvement is now in relation to DMD and SMA.
The DMD Hub is working closely with North Star Network , TREAT-NMD, NIHR , DMD UK registry and Duchenne Muscular Dystrophy Charities.
Seed funding for the DMD Hub comes from Duchenne UK. Other funding has come from Alex's Wish, Jack's Mission and some other DMD charities. Duchenne UK also fund some posts in collaboration with the NHS.