The project team

Dr Anne-Marie Childs
Principal Investigator
Anne-Marie is a Consultant Paediatric Neurologist and Lead for Neuromuscular Conditions at Leeds General Infirmary leading the neuromuscular service since 2000. She is a member of the SMA REACH network, clinical expert for NICE and NHSE and a trustee for SMA UK. She is committed to ensuring that those living with SMA in the UK receive the best possible care and delighted to be jointly leading this important project.

Professor Chiara Marini-Bettolo
Principal Investigator
Chiara is a Consultant in Neuromuscular disorders and the clinical lead for the Highly Specialised Service for Limb-girdle Muscular Dystrophies (LGMDs) at the John Walton Muscular Dystrophy Research Centre (JWMDRC), Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK. As part of her clinical role, is committed to bring innovation and treatments to the diagnostic and clinical care service. Chiara is also Honorary Professor in Neuromuscular disorders. She is Principal Investigator for Adult SMA REACH and the following patient registries: The UK SMA, UK FSHD, UK DM and MTM and CNM Patient registries which are all curated at The JWMDRC. Chiara’s research focuses on Real-world data and Patient reported outcome measures.

Vanessa Christie-Brown
Project Manager
Vanessa was a research scientist, working in the field of immunology, initially at The Royal Postgraduate Medical School and later at Imperial College London. In 2011, she joined The SMA Trust as Research Coordinator and SMA Europe until 2024 as Research Programme Manager. In July 2024, Vanessa took up the post of SMA Care UK Project Manager, to drive forward the update and implementation of the Standards of Care for people of all ages who live with SMA in the UK. The initiative will address people’s evolving care and management needs, reflecting developments around treatments, ensuring that those living with SMA are central to this process.

Grecia Benesperi
Project Coordinator
Grecia is the Project Coordinator and Project Assistant at Adult SMA Reach, based at the Translational and Clinical Research Institute, Newcastle University.

SMA Care UK Steering Committee

This group of healthcare professionals and patient representatives oversees the work of the team and sets priorities.

Dr. Anne-Marie Childs
Principal Investigator
Consultant Paediatric Neurologist and Lead for Neuromuscular Conditions at Leeds General Infirmary leading the neuromuscular service.

Professor Chiara Marini-Bettolo
Principal Investigator
Honorary Clinical Senior Lecturer and Consultant neurologist neuromuscular disorders at the Translational and Clinical Research Institute, Newcastle University and Newcastle Hospitals NHS Foundation Trust.

Vanessa Christie-Brown
Project Manager
Vanessa is the Project Manager based at SMA UK and Researcher at the Translational and Clinical Research Institute, Newcastle University.

Grecia Benesperi
Project Coordinator
Grecia is the Project Coordinator and Project Assistant at Adult SMA Reach, based at the Translational and Clinical Research Institute, Newcastle University.

Professor Giovanni Baranello
Giovanni is Professor of Paediatric Neuromuscular Disorders at The Dubowitz Neuromuscular Centre, UCL Great Ormond Street Institute of Child Health, NIHR Great Ormond Street Hospital Biomedical Research Centre & Great Ormond Street Hospital NHS Foundation Trust in London.

Claire Fitzpatrick
Claire is a Senior Research Coordinator for the SMA Reach team at Great Ormond Street Hospital, London (GOSH).

Dr. Channa Hewamadduma
Channa is a consultant neurologist with specialist interest in neuromuscular disorders at Sheffield Teaching Hospitals Foundation Trust and an Honorary Senior Lecturer at the University of Sheffield.

Dr Iain Horrocks
Iain is a Consultant Paediatric Neurologist at the Royal Hospital for Children in Glasgow.

Dr. James Lilleker
James is a Neurology Consultant and Honorary Senior Lecturer at the Manchester Centre for Clinical Neuroscience. He is co-chair of the Muscle Disease Unit, working in a joint neurology-rheumatology myositis clinic, and running the SMA assessment and treatment service for Greater Manchester.

Giles Lomax
Giles joined SMA UK as CEO in May 2023 to lead the charity into its next phase.

Grace Marston
Grace is a Paediatric Neuromuscular Care Advisor at Nottingham’s Children Hospital.

Dr. Robert Muni-Lofra
Robert is a Consultant Physiotherapist at the Newcastle University Translational and Clinical Research Institute.

Neeru Naik
Neeru is the Director of Services and Support at Muscular Dystrophy UK.

Dr. Emer O’Reilly
Emer is a Clinical Research Physiotherapist in paediatric neuromuscular disorder at The Dubowitz Neuromuscular Centre, UCL Great Ormond Street Institute of Child Health, NIHR Great Ormond Street Hospital Biomedical Research Centre & Great Ormond Street Hospital NHS Foundation Trust in London.

Dr. Mariacristina Scoto
Mariacristina is a Consultant in Neuromuscular Translational Research at Great Ormond Street Hospital in London. She is principal investigator (PI) and co-PI of a number of clinical trials, in SMA and other neuromuscular conditions.  She is Co-PI of the SMA REACH (SMA REsearch and Clinical Hub) UK Network. She sees the SMA Care UK project as an unique opportunity to bring clinical and patient experts together to develop targeted recommendations of care for the UK patients.

Portia Thorman
Portia is Head of Advocacy and Community at SMA UK. She is the mother of four children, her youngest son, now six, lives with SMA Type 1. 

Andi Thornton
Andi is a Trustee of the charity Treat SMA.