The John Walton Muscular Dystrophy Research Centre

Newcastle has long been a world leader in the treatment and management of muscle diseases. The John Walton Muscular Dystrophy Research Centre is part of the Institute of Genetic Medicine, within Newcastle University. It is recognised by Muscular Dystrophy UK as a centre of research and clinical excellence for inherited neuromuscular diseases.

The John Walton Muscular Dystrophy Research Centre is one of three centres in England for the diagnosis and management of inherited muscle diseases and runs clinics in Newcastle and at various locations across the north of England.

A service for acquired neuromuscular conditions is also delivered through The Newcastle upon Tyne Hospitals NHS Trust.

How to access the service

A patient can be referred for treatment in the centre by a Physiotherapist, occupational therapist, GP, consultant, specialist nurse or a care advisor.

Main contact number:

(0191) 241 8600

Website:

Newcastle Muscle Centre

Professor Kate Bushby

Professor Kate Bushby

Clinical Academic

Professor Katie Bushby is a member of the Neuromuscular Research Group within the Institute of Genetic Medicine and plays a leading role in the Clinical Reference Group for multi-system disorders. Together with Professor Straub, Professor Bushby co-ordinates the TREAT-NMD network and she is Vice President of the EU Committee of Experts on Rare Diseases.

Professor Hans Lochmüller

Professor Hans Lochmüller

Consultant Neurologist

Professor Lochmüller has a longstanding interest in the molecular genetics of the inherited myopathies and neuromuscular junction disorders. His research includes the further study of animal models of these disorders. This work helps understand the disease pathophysiology and permits monitoring disease progression and therapeutic interventions.

Professor Volker Straub

Professor Volker Straub

Neurologist

Professor Volker Straub was founding joint co-ordinator of TREAT-NMD, and is an executive board member of the World Muscle Society and Research and Development Director of the North Tees and Hartlepool NHS Foundation Trust. Professor Straub has a long-standing interest in the pathogenesis of muscular dystrophies.

Rita Horvath

Rita Horvath

Professor of Neurogenetics

Professor Rita Horvath is a clinical academic who was trained as a neurologist in Budapest, Hungary and completed her PhD on mitochondrial disease at the Montreal Neurological Institute.
She has developed a new service in Newcastle and follow ups a large number of patients with inherited peripheral neuropathies (Charcot-Marie-Tooth disease, CMT), which is a base for expanding research activities. The main focus of her research is to identify the molecular basis of disease with the aim of developing treatments for patients with rare inherited neurological conditions, such as mitochondrial disease and CMT.

Dr James Miller

Dr James Miller

Consultant Neurologist

Dr James Miller has a specialist interest in neuromuscular disease and in particular acquired and immune-mediated disorders including myositis, CIDP and myasthenia gravis. Dr. Miller has established specialist multidisciplinary clinics for patients with dermatomyositis and with paraprotein related neuropathies.

Dr Chiara Marini-Bettolo

Dr Chiara Marini-Bettolo

Consultant Neurologist

Dr Chiara Marini-Bettolo joined the Newcastle neuromuscular team in 2014 and see's patients with muscle-wasting conditions in clinic. Dr Marini-Bettolo also chairs the Northern England Neuromuscular Clinical Network, aiming to improve care and support for people with muscle-wasting conditions in the region.

Professor Doug Turnbull

Professor Doug Turnbull

Consultant Neurologist

Professor Turnbull is the National lead of the National Highly Specialised Services for Rare Mitochondrial Diseases of Children and Adults. This involves 3 centres (Newcastle, London and Oxford) and provides diagnostic and specialist clinical services for patients with mitochondrial diseases. He is also the Director of the Wellcome Trust Centre for Mitochondrial Research

Edwina Perkins

Edwina Perkins

Regional Care Advisor

Edwina has worked as a regional care advisor since 2006, having come from a background in Social Work in Learning and Physical Disability. Edwina facilitates Muscular Dystrophy Campaign condition specific days, family weekends and helps run care events in the North East region. She co-ordinated the Transition Guidelines, and works with local colleges to train staff in supporting teenagers and young adults with neuromuscular conditions. Get in touch with Edwina by E: Edwina.perkins@nuth.nhs.uk or T: 0191 241 8761.

Other key people in the team include:

  • Michelle McCallum , Physiotherapist
  • Louise Hastings , Genetic Specialist Nurse
  • Gail Eglon , Specialist Nurse
  • Dr Chiara Marini Bettolo , Speciality Doctor
  • Dr Rita Barresi , Muscle Immunoanalysis

Adult

Clinics are held at Newcastle, Carlisle and Middlesbrough
  • Inherited muscle disease (including national for LGMD)
  • Mitochondrial disease (some national services)
  • Specialised nurse led myotonic dystrophy clinics with cardiology input
  • Congenital myasthenia
  • Inherited peripheral neuropathy
  • Acquired neuropathy
  • Inflammatory muscle disease
  • Orthotics
  • Dedicated neuromuscular cardiology
  • Access to respiratory, gastroenterological, orthopaedic clinics with close liaison with NMD team as appropriate

Children

Clinics are held at Newcastle, Carlisle, Whitehaven, Stockton, Hartlepool and Sunderland
  • Fast track assessment of suspected Duchenne muscular dystrophy or spinal muscular atrophy type 1/2
  • Inherited muscle disease(including national referrals for LGMD and others)
  • Congenital myasthenia
  • Inherited peripheral neuropathy
  • Inflammatory muscle disease
  • Mitochondrial disease
  • Arthrogryposis
  • Orthotics
  • Dedicated neuromuscular cardiology
  • Access to respiratory, gastroenterological, orthopaedic clinics with close liaison with NMD team as appropriate
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