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Meet the team
Meet the people behind Adult SMA REACH
Prof Chiara Marini Bettolo
Chief Investigator and 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.
Dr Robert Muni Lofra
Consultant physiotherapist
Robert is a Consultant Physiotherapist and lead physiotherapist 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.
Robert co-leads the Allied Health Care Professional national network jointly with paediatric colleagues at GOSH, supporting the delivering of the functional assessment across the network by identifying training needs and providing training and support to sites. Robert provides clinical management advise alongside the development and implementation of functional outcome measures. Robert’s research focuses on assessment of disease progression and identifying care needs of neuromuscular patients. Robert also has a particular interest in the development of new outcome measures and wearable devices.
Helen Walker
UK SMA Patient Registry Manager
Helen has a research background and has worked with patient data for over a decade, and has specialised in the field of rare neuromuscular registries for over five years, bringing valuable skills to the team.
Jess Page
PROJECT COORDINATOR
Jess holds an undergraduate degree in Biomedical Science and a master’s degree in Neuromuscular Disease. She has been working in the Spinal Muscular Atrophy (SMA) field for two years, previously contributing to the TREAT-NMD project which supported global registries in implementing the TREAT-NMD SMA expanded core dataset. Jess has a keen interest in translational research and trial planning.
Elena Karkkainen
DATA Manager
Elena combines expertise in data analytics and medical sciences, holding a degree in Medical Sciences.
She has a deep understanding of medical data, human physiology, and anatomy, and she leverages data-driven insights in her SMA research focused on real-world data collection studies.
Elena leads on data entry and manages the database. Provides data reports when sites request and is responsible for resolving any site queries.
Aleks Carver
data COORDinator
Aleks received a BA in English and Related Literature and an MA in English Literary Studies from the University of York, completing his studies in 2023. He subsequently trained in Data Analytics and joined the John Walton Muscular Dystrophy Research Centre (JWMDRC) in 2024.
Aleks has a keen interest in data science and coding, assisting with data entry and analytics, resolving site queries, and providing administrative support.
Dionne Moat
Physiotherapist
Dionne qualified as a Physiotherapist in 2003 and completed an MSc in Clinical Research in 2022. With extensive experience across various healthcare settings, she has specialized in neuro rehabilitation, particularly treating patients with traumatic brain injuries and complex neurological conditions. Joining the John Walton Muscular Dystrophy Research Centre (JWMDRC) in 2016, she now works on research projects and provides clinical care to children and adults with neuromuscular disorders.
Jassi Michell-Sodhi
Physiotherapist
Jas is a Clinical Specialist Neuromuscular Physiotherapist at the John Walton Muscular Dystrophy Research Centre since 2017. He works with both children and adults in clinical care and research, advocating for real-world data collection in healthcare. Jas has supported numerous clinical audits and research projects in Newcastle and across the UK.
Grecia Alvarez
project assistant
Grecia joined the John Walton Muscular Dystrophy Research Centre (JWMDRC) in July 2023, contributing to engagement events and administrative tasks. She assists with creation and maintenance of study documentation. She is responsible for organising Adult SMA REACH network activities and is main point of contact for stakeholders.
Stephannie Tanner
clinical nurse
Steph has been a Nurse Specialist in Neuromuscular conditions at the John Walton Muscular Dystrophy Research Centre since 2022. Her aim is to provide a holistic care approach towards patients whilst also collecting real – world data.
Steph works with both paediatric and adult patients in clinical care and research.
If you have any specific queries, please use the email address below and name the team member to whom your enquiry is directed, we will do our best to get back to you as quickly as possible.
