Key Partners

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

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.

John Walton Muscular Dystrophy Research Centre 

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.

Great Ormond Street Hospital (GOSH)

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. 

 

STEERING COMMITTEE

Emma Heslop

 

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 Reuben

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 Johnson

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 Volker Straub

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 Michela Guglieri

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 Francesco Muntoni

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 Anne-Marie Childs

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.

 

 

DMD Hub Sites

Centres of Excellence:

DMD Hub Sites:

Working in Partnership

The DMD Hub is working closely with North Star Network , TREAT-NMD, NIHR , DMD UK registry and Duchenne Muscular Dystrophy Charities.

Funding

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.

DMD Hub Governance Structure

Our Staff Network

Corinne Betts - Clinical Trial Coordinator

MDUK Oxford Neuromuscular Centre, University of Oxford

Corinne Betts is the Clinical Trial Co-ordinator and Operations Manager for the STRONG Team, led by Prof. Laurent Servais at the MDUK Oxford Neuromuscular Centre, University of Oxford. She manages a portfolio of academic and industry led studies in the paediatric neuromuscular field.

Corinne obtained her BMedSci degree from the University of Kwa-Zulu Natal, and her DPhil/PhD from the University of Oxford, where she worked with Prof. Matthew Wood in the field of antisense therapy for the treatment of Duchenne Muscular Dystrophy. She continued in Prof. Wood’s laboratory working as a postdoctoral researcher for a further 5 years.

Corinne has worked as a Project Manager within the STRONG Team, where she assisted with regulatory approvals and the initiation of multiple clinical studies. She has 12 years’ experience in the biomedical field focussed on drug discovery and pre-clinical screening for rare neuromuscular diseases, and spent 4 years working in quality management for a successful immunodiagnostics biotech company. She has extensive experience managing independent research, leading teams, and successfully collaborating with experts in multiple fields.

01865 272199
corinne.betts@paediatrics.ox.ac.uk

Chloe Perry - Clinical Trial Coordinator

Robert Jones and Agnes Hunt Hospital

I joined the DMD Hub as a Clinical Trial Coordinator in May 2021. I have worked at The Robert Jones and Agnes Hunt Orthopaedic Hospital since September 2020 where I originally joined the research department as a placement student for my university degree.  I am expected to graduate from my Biomedical Science degree in May 2022, where I would have completed 4 years of study. I work on neuromuscular studies within the department and coordinate the DMD studies we are currently running.

01691 404142
chloe.perry2@nhs.net

Tracy Langan - Clinical Trials Coordinator

Royal Hospital for Children, Glasgow

My role is to make sure that all trial visits are carried out within the trial timetable and that parents are given appointment information for their visits.  I liaise with the clinical research team to organise the appointment dates and make sure that any tests that are required for the trial visit are arranged for the same day, as well as arranging travel for patients and their families. I am also responsible for data input onto the various clinical trial databases, answering any queries from the trial sponsors and accurate upkeep of the trial Master Site Files for each clinical trial taking place in Glasgow. In addition, I organise monitoring and site inspection visits.

0141 451 6527
Tracy.Langan@ggc.scot.nhs.uk

Mukul Verma - Clinical Trial Coordinator 

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

I am qualified dental specialist and consultant endodontist. I have completed MRes Translational medicine and therapeutics from Newcastle University covering in depth knowledge on drug discovery and experimental clinical trials in UK and EU. My key research interests are inflammation and identification of novel pain pathways. My Ph.D. project on dental pulp stem cells in Translational and Clinical Research Institute, Newcastle University made be experienced in RNA sequencing, various wet lab skills involved in transcriptomics and proteomics, data analysis and management. As a Clinical Trials Coordinator, I am responsible for the management of clinical research studies in John Walton Muscular Dystrophy Research Centre. The scope of my role is not limited to early approvals, set-up, and maintenance and closure of clinical trials.

mukul.verma@nhs.net

Georgina Boyle - Clinical Trial Coordinator 

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

georgina.boyle@newcastle.ac.uk

Ellie Drummond - Clinical Trial Coordinator

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

As a Clinical Trial Coordinator at the JWMDRC, my role is to support the set-up and coordination of our clinical research portfolio, which includes clinical trials of an investigational medicinal product and gene replacement therapy.

I support the studies at a very early stage from feasibility to costing negotiations to the set-up and monitoring delivery of research, ensuring research studies that are conducted adhere to Good Clinical Practice (GCP).

I work closely with teams within Newcastle University, the Clinical Research Facility and the Newcastle-upon-Tyne Hospitals NHS Foundation Trust, together with Sponsors and Contract Research Organisations across the world to get trials up and running as efficiently as possible in order to facilitate the delivery of world class research.

ellie.drummond@newcastle.ac.uk

Dana Gergely - Clinical Trial Coordinator

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

As a Clinical Trials Coordinator, I am responsible for the coordination of a portfolio of clinical research studies in Genetic Neuromuscular Diseases within the JWMDRC. This includes early approvals, start-up, and maintenance and close out of clinical studies. I am part of a wider collaborative team in The Newcastle upon Tyne Hospitals NHS Foundation Trust and the University of Newcastle, who work together to deliver research activities, targeting a better care and treatment of those with neuromuscular conditions.

I am a qualified Nurse and Midwife, with experience working in different specialities but most of my career I spent as Midwife/Head Midwife in both public and private hospitals. My research experience includes data management and coordination in hepatic diseases and now in Genetic Neuromuscular Diseases.

dana.gergely@newcastle.ac.uk

Sam Fitzsimmons - Clinical Trial Coordinator

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

As a Clinical Trial Coordinator in the JWMDRC, my role is to support the setup and coordination of our clinical research portfolio, including natural history studies, clinical trials of an investigational medicinal product and gene replacement therapy. I support the early stages of research, from grant applications for new research proposals and site feasibility, to the set-up and delivery of world-class research. I am part of a wider collaborative team in The Newcastle upon Tyne Hospitals NHS Foundation Trust and the University of Newcastle, who work seamlessly together in order to deliver exceptional research, with the aim to better the care and treatment of those with neuromuscular conditions

sam.fitzsimmons@newcastle.ac.uk

Anna Irvin - Clinical Trial Coordinator

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

I have maintained a keen interest in research since completing my MA in Psychology in 2008. Working as a Research Assistant, Assistant Psychologist and Research Associate in academic institutions and more recently acting as Industry Coordinator for the Clinical Research Network (NENC) has ensured that I have experience in delivering as well as coordinating research.

In my role as Clinical Trials Coordinator for the JWMDRC, I help to coordinate the wide portfolio of trials delivered by the team. My work spans the early stages of developing and costing grant applications and assessing study feasibility, through to formal study set-up activities and then monitoring study delivery. All aspects of my role involve adhering to Good Clinical Practice and ensuring that research is conducted in accordance with UK regulations and local guidance. I work collaboratively with teams within Newcastle University, the Clinical Research Facility and the Newcastle-upon-Tyne Hospitals NHS Foundation Trust, together with Sponsors and Contract Research Organisations to get trials up and running as efficiently as possible.

0191 241 8649
Anna.Irvin@newcastle.ac.uk

Bethany Bashford-Chuchla - Paediatric Research Nurse

Great Ormond Street Hospital NHS Foundation Trust

I qualified as a children’s nurse in 2016 and have worked in a range of settings including a general paediatric and surgical ward, a busy trauma A&E and abroad. I recently joined the clinical research facility at GOSH and now work on a number of studies within the renal and neuromuscular portfolio.

bethany.bashford-chuchla@gosh.nhs.uk

Lucinda Furtado - Clinical Trial Coordinator

Great Ormond Street Hospital NHS Foundation Trust

I have previously worked at GOSH as a data manager on a number of ongoing clinical trials. I have recently joined the GOSH neuromuscular research team as a coordinator and will be working on the set up and delivery of a range of studies within the portfolio.

Lucinda.Furtado@gosh.nhs.uk

Emeka Agbasi - Clinical Trial Coordinator 

Great Ormond Street Hospital NHS Foundation Trust

emeka.agbasi@gosh.nhs.uk

Sam Clements - Senior Research Coordinator

Great Ormond Street Hospital NHS Foundation Trust

I’m a Senior Research Coordinator at Great Ormond Street managing a portfolio of neuromuscular studies. This involves setting up, day to day management of and closing of clinical trials.

sam.clements@ucl.ac.uk

Marta Zancolli - Senior Trials Coordinator

Great Ormond Street Hospital NHS Foundation Trust

Marta is an enthusiastic and dedicated individual with extensive and in depth experience in the coordination and management of paediatric clinical trials, from first in human/child and early phase studies to gene therapy trials.


 

+44 (0)2079052188
m.zancolli@ucl.ac.uk

Sharon Rafferty - Clinical Nurse Manager 1

Children's Health Ireland, Temple Street

+ 01 8784896
sharon.rafferty@cuh.ie

Zoe Oliver - Paediatric Research Nurse

MDUK Oxford Neuromuscular Centre, University of Oxford

zoe.oliver@paediatrics.ox.ac.uk

James Jones - Advanced Nurse Practitioner

Robert Jones and Agnes Hunt Hospital

James completed his paediatric nurse training in 2005 in Manchester and spent 3 years working at the burn's unit at Manchester Children's Hospital. He relocated to Shrewsbury in 2008 and spent time working on neonates before working for 6 years full time at Hope House Children's Hospice providing specialist palliative care to children and young adults. In 2015 James took on a new research post at Shrewsbury and Telford Hospital Trust and spent 5 years developing the paediatric portfolio as well as supporting many other specialities within research. He continued and still continues to work one day a week at hope house clinically and is passionate about supporting families clinically and driving research.

james.jones9@nhs.net

Theresa Garratt - Research Nurse

Robert Jones and Agnes Hunt Hospital

I have worked as a research nurse at the Robert Jones and Agnes Hunt Orthopaedic Hospital since 2016.  My role with the DMD hub at Oswestry is to assist in the set-up and running of clinical trials. I particularly enjoy the clinical aspects of my job, meeting the many lovely boys and their families enrolled onto the studies we run here.  As a team we strive to drive forward research in DMD. 

01691 404354
theresa.garratt@nhs.net

Lauren Corcoran - Paediatric Clinical Research Nurse

Evelina London Children's Hospital

lauren.corcoran@gstt.nhs.uk

Sophie Emery - Paediatric Clinical Research Nurse

Evelina London Children's Hospital

02071887188 ext. 80070
sophie.emery@gstt.nhs.uk

Danielle Nash - Paediatric Research Nurse

Evelina London Children's Hospital

I qualified as a Paediatric Nurse in 2015. After qualifying I spent a few years working as a nurse in a busy Paediatric Emergency Department before recently transitioning into Paediatric Research. 

My current role at ECLH is focused on managing various aspects of the Paediatric Neurology Portfolio.

danielle.nash@gstt.nhs.uk

Donna Ellis - Research Nurse

Leeds Teaching Hospitals NHS Trust (LTHT)

After completing a degree in Children’s nursing in 2001, Donna started her career with the Leeds Teaching Hospital in children’s medicine. In 2007 she achieved a Community Specialist Practitioner First class Degree with Honours, but instead of moving fully into a community role, she chose to become a Children’s Nutrition Nurse Specialist. This enabled her to combine her experience, skills and passion for working in an acute setting with the autonomy and the community aspects of supporting children and families to manage complex nutritional health needs at home. 

Donna has been a Children’s research nurse at Leeds Children’s Hospital since May 2017 and has worked across many areas of paediatric research, utilising her background in general medicine. She has also co-ordinated two large international Neuromuscular clinical trials to date, and enjoys working alongside Dr Childs and the Neuromuscular team at Leeds to deliver high quality research and patient care. 

donna.ellis2@nhs.net

Naomi Barkby - Research Nurse

Leeds Teaching Hospitals NHS Trust (LTHT)

n.barkby@nhs.net

Fay Houchen - Specialist Nurse  

Addenbrooke's Hospital

Fay has 19 years of experience as a Neonatal Acute transport team nurse and has brought a wealth of experience from this previous post.

She joined the Neuromuscular team in November 2017 and is the first point of contact for family queries.

She liaises with all the families, organises the joint clinics, study days and internal meetings within the department. She also helps the physiotherapists with their assessments in the neuromuscular clinics.

01223 216662
fay.houchen@addenbrookes.nhs.uk

Jen Dunne - Neuromuscular Nurse Specialist

Royal Hospital for Children, Glasgow

Jen has worked as a Neuromuscular Nurse Specialist within the team for the past six years. Her current remit is to organise and undertake clinical assessment at North Star clinics, co-ordinate patient care (both acute and out-patients) and is the trial coordinator for our current FOR-DMD trial.  Jen is a nurse prescriber and is currently studying for an MsC in Advanced Nursing Practice. She is in the process of completing an audit, investigating patient education and understanding of IM Hydrocortisone in steroid-treated DMD boys.

0141 451 6473
Jennifer.dunne@ggc.scot.nhs.uk

Tracey Bingham - Paediatric Research Sister

Bristol Royal Hospital for Children

0117 3420196
Tracey.Bingham@uhbw.nhs.uk

Natalie Fineman - Lead Research Nurse

Bristol Royal Hospital for Children

0117 342 0197
natalie.fineman@uhbw.nhs.uk

Katie Price - Paediatric Research Nurse

University Hospitals Birmingham NHS Foundation Trust – Birmingham Heartlands Hospital

I graduated as a Paediatric Nurse in 2012 and worked in children’s Intensive care for over 7 years. Here I gained a particular interest in research and went onto work in their research team for 2 years before I started working for Birmingham Heartlands Hospital, part of University Hospitals Birmingham NHS Foundation Trust as a Paediatric Research Nurse in 2019. I work on a variety of trials that cover several specialities but the majority of our studies are academic and commercial trials in the DMD and SMA population. We strive to provide high quality research within our team.

Katie.Price@uhb.nhs.uk

Eve Irvine - Paediatric Research Nurse

University Hospitals Birmingham NHS Foundation Trust – Birmingham Heartlands Hospital

eve.irvine@UHB.nhs.uk

Laura Thrasyvoulou - Paediatric Research Nurse

University Hospitals Birmingham NHS Foundation Trust – Birmingham Heartlands Hospital

As the Paediatric Research Nurse for DMD and SMA, based at Birmingham Heartlands Hospital, part of the University Hospitals Birmingham NHS Foundation Trust, I am involved in the set-up, running and close down of clinical trials both commercial and academic for the DMD and SMA population. There are 3 Paediatric Research Nurses and a dedicated Data Manager that been providing high quality research for over 6 years. Our commercial trial profile has increased dramatically over the last 4 years and continues to do so. We pride ourselves on providing a welcoming and safe environment for the patients and their parents / caregivers. We are constantly striving to improve our research environment to ensure that the patients are comfortable and happy, with the aim of having a positive experience whilst enrolled on a research study. 

0121 424 2917
Laura.thrasyvoulou@uhb.nhs.uk

Nicola McLarty - Research Nurse

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

nicola.mclarty1@nhs.net

Jayne Banks - Senior Research Nurse

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

I am a paediatric research nurse and I have worked on the CRF since 2012 delivering early phase clinical trials to both children and adults. The disease areas I have worked with on clinical trials have included DMD, SMA, Achondroplasia, Haemophilia and JIA. Other clinical trials in set up are looking at epilepsy, mitochondrial disease and autism treatments. We enrol participants regionally, nationally and internationally.

We have a dedicated paediatric area within the department and aim to deliver family centred, holistic care working with both academic and pharmaceutical partners to develop new treatments for chronic and rare diseases. We have delivered the first UK Pfizer DMD gene therapy dose in May 2021 and I am currently involved in the set-up of a number of other gene therapy studies.

jayne.banks@newcastle.ac.uk

Rebecca Donegan - DMD Research Nurse

Alder Hey Children's NHS Foundation Trust

Rebecca graduated from Edge Hill University in 2013, and was awarded with a bachelor of Science degree in Children’s Nursing. She received her first nursing post at a Alder Hey Children’s Hospital, working as a staff nurse on a medical specialty ward from 2013-2018. She then joined the clinical research team in 2018 and was assigned to the DMD research post in March 2020, before she was seconded to assist with COVID-19 research studies.

Rebecca is currently working with the Duchenne Muscular Dystrophy Research team. She co-leads on numerous DMD trials and works alongside a team of DMD research professionals. Her role helps to assist the study sponsors in finding better and safer treatments for children and young people with DMD, and hopefully in the future to find a cure.

 

 

rebecca.donegan@alderhey.nhs.uk

Tim Henderson - DMD Research Nurse

Alder Hey Children's NHS Foundation Trust

Tim has been appointed as a Duchenne muscular dystrophy Research Nurse at Alder Hey. He qualified as a staff nurse at Alder Hey in 2003 and worked on the regional oncology unit at Alder Hey.

He became a research nurse at the Clinical Research Facility in 2012, where he has lead on multiple early phase research studies, including oncology studies, studies in theatre, and gastroenterology studies amongst others. Also, he has led on 2 studies that recruited the first global patients to the study.

Away from work he is a family man and spends most of his weekends watching his children play multiple sports! He is a keen cyclist and plays football socially once a week.

0151 252 5744
timothy.henderson@alderhey.nhs.uk

Jane Freebody - Specialist Physiotherapist

MDUK Oxford Neuromuscular Centre, University of Oxford

Jane.Freebody@ouh.nhs.uk;

Hayley Ramjatten - Specialist Neuromuscular Physiotherapist

MDUK Oxford Neuromuscular Centre, University of Oxford

Hayley is a Specialist Neuromuscular Physiotherapist, at Oxford University Hospitals. She sees a large cohort of patients with neuromuscular conditions, who access Oxford as their tertiary centre for neuromuscular and respiratory care.

She supports the Oxford diagnosis specific multidisciplinary clinics, which run on a weekly basis and also provides outreach support to general neurology clinics and offers community and hospital visits as required.

Within her role she supports patients in their orthopaedic and respiratory management, offering input during planned and unplanned admissions and linking in with other members of the wider multidisciplinary team and community therapists.

She is also a part of the Oxford Congenital Myasthenia Service. This is a nationally funded service, which includes both paediatric and adult patients. She is currently working on projects in collaboration with other specialist physiotherapy colleagues, on the application of outcome measures and exercise advice in this patient cohort.

Charlotte Lilien - DMD-Hub Advanced Physiotherapist Neuromuscular Service

MDUK Oxford Neuromuscular Centre, University of Oxford

Since my Masters degree in Physiotherapy obtained in June 2013, I started to work in September 2013 as Physiotherapist at the Institute of Myology; a centre specialized in care and research in adult and paediatric neuromuscular diseases. Over the course of my career, I have participated in the creation of the I-Motion Institute, and was the Physiotherapy Coordinator for an international natural history study in Myotubular Myopathy. 

I am also a part of the ActiMyo team, composed of engineers and clinicians. This innovative device uses magneto-inertial sensors to permit movement, gait and activity analysis in uncontrolled environments, and one of its application has been qualified by the European Medical Agency as a clinical endpoint in clinical trials in Duchenne muscular dystrophy. My role is to give a physiotherapy point of view and input, and to train the physiotherapists conducting the clinical trials. Since 2018, I’m a Master trainer and consultant for scales and outcome measures used in neuromuscular clinical trials and clinics.

After more than six years of collaboration with Laurent Servais in Paris, I decided to join his team within the MDUK Oxford Neuromuscular Centre, a partnership between the University of Oxford and Muscular Dystrophy UK to drive the development of new therapies and increase national clinical trial capacity in neuromuscular diseases. .  

charlotte.lilien@paediatrics.ox.ac.uk

Nicholas Emery - Neuromuscular Clinical Specialist Physiotherapist

Robert Jones and Agnes Hunt Hospital

I qualified from Keele University in 2005 with a first in Physiotherapy.  I started working at the Neuromuscular Centre in Winsford, treating and managing adults with NMD.  This involved a range of interventions from stretching programmes, musculoskeletal assessments and treatment through to hydrotherapy and exercise prescription.

In 2009, I started work at the RJAH Orthopaedic Hospital working alongside Dr Quinlivin as part of the NMD MDT.  This again involved management of adults with NMD but now also paediatric patients. In addition, my role expanded to include being involved in NMD research trials.  I also worked in two further departments:

1. Orthotic Research and Locomotion Assessment Unit (ORLAU), a specialist department assessing abnormal gait and provision of various interventions to improve functional walking.

2. Alice Ward, which involved the treatment and rehabilitation of paediatric patients with a range of conditions - CP, NMD, chronic pain, CFS etc.

I have also undertaken further study at Keele University obtaining a Postgraduate Diploma (Physio) in 2012.  I have attended a variety of external conferences concerned with the care and management of NMD patients.

+44(0)1691 404493
Nicholas.emery@rjah.nhs.uk

Sinead Warner - Neuromuscular Physiotherapist

Royal Manchester Children's Hospital, Manchester University Hospitals NHS Foundation Trust

Sinead Warner completed her physiotherapy degree in Manchester and following this moved to New Zealand, where she completed rotational posts including paediatric specialities. On returning to Manchester, Sinead worked as a paediatric community physiotherapist where she developed an interest in neuromuscular conditions. Sinead now works as a highly specialised physiotherapist within the Neuromuscular team.

sinead.warner@mft.nhs.uk

Jennie Sheehan - Clinical Specialist Paediatric Physiotherapist

Evelina London Children's Hospital

Jennie is a chartered and state-registered physiotherapist with many years of experience in paediatrics. She has worked for most of her career in paediatric neuromuscular disorders, working at a number of specialist centres, including The Hammersmith Hospital with Professor Dubowitz, then Professor Muntoni. When working at Guys Hospital, she was involved in both the Paediatric and Adult Neuromuscular clinics. For the last 11 years, she has been at The Evelina London Children's Hospital. She also has experience as a Paediatric Community Physiotherapist, and is therefore very aware of the challenges that are met by therapists working in different environments.

She works as part of the MDT team at The Evelina London, carrying out standardised assessments, providing clinical management and advice to families and local physiotherapists. She also works closely with the orthopaedic and respiratory physiotherapy teams, and the orthotists.

Jennie was one of the developers of the NorthStar Ambulatory Assessment for DMD, which after publication, became widely recognised and adopted as the standardised assessment of choice for many research studies in DMD, both nationally and internationally, and is also an essential part of the North Star national database. She is the physiotherapy representative on the National North Star Steering Committee.

Jennie has been involved in a number of research projects and publications -  the most recent being the national study on hydrotherapy in DMD, as the independent assessor of prescription suitability and compliance. She has set-up, and continued to run, the South East Physiotherapy Network for NMD. She is a member of APCP and the APCP Neuromuscular group, and was previously a Committee member.

Jennie is the lead for a small team of specialist physiotherapists in Neuromuscular Disorders at Evelina London.

02071884639
jennie.sheehan@gstt.nhs.uk

Clara Esposito Pahissa - Research Neuromuscular Physiotherapist

Evelina London Children's Hospital

Clara graduated from King’s College London in 2012 and completed her rotations at North Middlesex Hospital. In October 2019, she joined the Neuromuscular Team at the Evelina London Children’s Hospital, as the Research Neuromuscular Physiotherapist funded by the DMD Hub. She supports the Neuromuscular Multidisciplinary clinics which take place weekly and takes part in the research trials.

Clara.EspositoPahissa@gstt.nhs.uk

Steph Wadsworth - Physiotherapist 

Leeds Teaching Hospitals NHS Trust (LTHT)

steph.wadsworth@nhs.net

Lindsey Pallant - Clinical Specialist Physiotherapist

Leeds Teaching Hospitals NHS Trust (LTHT)

Lindsey has over 15 years experience as a member of the Leeds Neuromuscular team. She works as part of the MDT but also runs Physio led clinics seeing patients for follow-up. For the last 5 years, she has also been working as the clinical evaluator in an increasing number of research studies that have opened at our centre completing motor and respiratory assessments on young people.

Lindsey is an active member of the Association of Paediatric Chartered Physiotherapists and chairs the Neuromuscular Specialist Group.

0113 3926361
Lindsey.pallant@nhs.net

Catherine Ward - Senior Children’s Physiotherapist

Addenbrooke's Hospital

Cath qualified from Coventry University in 2004 with a BSc Hons Physiotherapy.  Cath completed her rotations at Peterborough District Hospital. In 2006, Cath began working as a Community Paediatric Physiotherapist in Waltham Forest, before moving to her current post as a Community Paediatric Physiotherapist  at Cambridgeshire Community Services NHS Trust in 2009.

Cath developed a special interest in Neuromuscular Disorders from her time working with this client group during her community paediatrics placements. Cath began working in the Addenbrookes Neuromuscular Service from when it was first formed, developing the physiotherapy role and provision within the service over the years. Cath has provided support and training to community therapists within the region, regarding the management of neuromuscular disorders and she has been involved in the physiotherapy role for the SUMMIT clinical trial.

When not in the clinic, Cath works for Cambridgeshire Community Services (CCS NHS Trust) as a Senior Community Paediatric Physiotherapist.  This role is primarily a clinical role supporting CYP with complex needs in the community, including those with neuromuscular conditions.

01480 418581
catherine.ward5@nhs.net

Jacqui Taylor - Clinical Lead for CYP Physiotherapy

Addenbrooke's Hospital

01223 218065
jacquitaylor@nhs.net

Rebecca Hart - DMD Hub Research Physiotherapist

Royal Hospital for Children, Glasgow

Rebecca has been working with the Neuromuscular Physiotherapy team in Glasgow since March 2020. Her post is being funded by the DMD Hub to support the team’s trial capacity. She has extensive experience in a range of specialist rotations in both adults and paediatrics, in hospitals in and around Glasgow. She has worked in the Royal Hospital for Children in Glasgow since 2018. Within this fixed term post, Rebecca is working as a research assistant on the TAMDMD, VISION-DMD and now on the Sarepta-ESSENSE drugs trials. Rebecca also supports the DMD clinics and works with the wider neuromuscular population to support the team in pursuing further upcoming trials. 

Rebecca.hart@ggc.scot.nhs.uk

Sarah Brown - Specialist Neuromuscular Physiotherapist

Royal Hospital for Children, Glasgow

Sarah has worked at the Royal Hospital for Children Glasgow for ten years, and as part of the Neuromuscular Physiotherapy Team for seven of these years. This post involves working alongside the neuromuscular multi-disciplinary team, assessing and treating patients at the out-patient clinics and as in-patients on the wards.  Supporting patients and their families in their homes and schools is also a key part of the post. Research trials for Duchenne Muscular Dystrophy has become an increasing aspect of the role and she has seen the FOR-DMD trial through from beginning to completion.  She is currently a Clinical Evaluator for the VISION-DMD and TAMDMD trials, and is preparing for the Sarepta-ESSENSE trial to begin later in 2020.

Sarah.Brown6@ggc.scot.nhs.uk

Susanne McKenzie - Specialist Neuromuscular Physiotherapist

Royal Hospital for Children, Glasgow

Susanne is a Specialist Neuromuscular Physiotherapist, working with the Neuromuscular team at the Royal Hospital for Children, Glasgow, since 2014.  As part of her role, Susanne is involved with clinical trials, as a clinical evaluator. In 2020, she is working on the VISION-DMD and TAMDMD trials, and is also the research assistant for FOR-DMD and SCOT-DMD. The team are preparing to be involved in the SAREPTA-ESSENCE trial later in 2020. In addition to trials, Susanne assesses and treats neuromuscular patients along with the multi-disciplinary team.  This includes out-patients, in-patients and community visits. 

Susanne.McKenzie@ggc.scot.nhs.uk

Marina Di Marco - Principal Neuromuscular Physiotherapist

Royal Hospital for Children, Glasgow

Marina Di Marco is the Principal Neuromuscular Physiotherapist based in the Queen Elizabeth University Hospital in Glasgow. She has worked in the field of neuromuscular disorders for thirty years and works with both children and adults with muscle wasting conditions. Marina has a clinical, research and teaching remit, and leads the neuromuscular physiotherapy service in Glasgow and the West of Scotland.

Marina is also the Lead Clinician for the Scottish Muscle Network, supporting research and education throughout Scotland and has been in this post since November 2013.

Marina participates in training physiotherapists for research trials globally and presents on standards of care at international workshops.

0141 354 9205
Marina.DiMarco@ggc.scot.nhs.uk

Rosanna Rabb - Paediatric Neuromuscular Physiotherapist

University Hospitals Birmingham NHS Foundation Trust – Birmingham Heartlands Hospital

I graduated in 2001 and completed my junior rotations at Hammersmith and Charing Cross Hospital, London.  Here, I gained experience working with one of the leading neuromuscular services and it started my special interest in this field.  I then went on to specialise as a senior paediatric physiotherapist at Hammersmith hospital in 2003, which also involved working within the paediatric physiotherapy department at St Mary's Hospital in London, and gaining experience within both the community and acute paediatric physiotherapy. 

After traveling the world for a year, I then came back to England to work at Chelsea and Westminster hospital as a Senior Paediatric Physiotherapist before relocating to Birmingham.  Initially I worked for a year as a community physiotherapist, both within the special needs schools and the child development centres. I then moved to Birmingham Children’s Hospital where I worked for 9 years and specialised in the field of neurology, with a particular interest in neuromuscular.  In 2017, I was appointed to my current role at Birmingham Heartlands Hospital, as a Paediatric Neuromuscular Physiotherapist.

0121 424 3820
Rosanna.rabb@uhb.nhs.uk

Heather McMurchie - Paediatric Neuromuscular Physiotherapist

University Hospitals Birmingham NHS Foundation Trust – Birmingham Heartlands Hospital

I work at Birmingham Heartlands Hospital as a Specialist Neuromuscular Physiotherapist in the Regional Paediatric Neuromuscular Clinic. I undertake assessments and support the local physiotherapy teams with the treatment of our patients.  I am involved in a number of national and international research studies for the treatment of DMD and SMA. 

I qualified as a Chartered Physiotherapist in 1992 and commenced work at Birmingham Heartlands Hospital as a junior physiotherapist undertaking a variety of rotations.  I have worked in paediatrics since 1996 and started specialising in paediatric neuromuscular conditions in 1998.  During this time the management of neuromuscular conditions has improved significantly, I have enjoyed being part of this development, and I am looking forward to the advances.

0121 424 3820
heather.mcmurchie@uhb.nhs.uk

Dionne Moat - Neuromuscular Research Physiotherapist

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

I am a physiotherapist and have been qualified for 15 years. My background is neuro-rehabilitation and I joined the Newcastle Muscle team is 2016. I work with both children and adults with neuromuscular disease in clinical trials. I am currently studying for a Masters in Clinical Research at Newcastle University. 

dionne.moat@newcastle.ac.uk

Jassi Amritpal Singh Sodhi - Neuromuscular Research Physiotherapist

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

I am a neuromuscular research physiotherapist based at the John Walton Muscular Dystrophy Centre. I joined the team in March 2017. Prior to my current role I have worked as a senior physiotherapist working with people with learning and developmental disabilities.


My current role allows me to work across both clinical and research strands. I am currently involved with multiple clinical trials in Duchenne muscular dystrophy, as well as a natural history study in dyferlinopathy.

jassi.sodhi@newcastle.ac.uk

Robert Muni Lofra - Consultant Neuromuscular Physiotherapist

Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust

I am a Neuromuscular Physiotherapist at the John Walton Muscular Dystrophy Research Centre in Newcastle upon Tyne (UK).  I started working with neuromuscular patients back in Barcelona in Hospital Sant Joan de Déu as a Paediatric Physiotherapist. In 2014, I moved to the JWMDRC to work exclusively in NMD. My professional activity covers provision of clinical management and research activity in Neuromuscular diseases with a special interest in SMA. Robert is currently undertaking a PhD.

0191 2418865
robert.muni-lofra@ncl.ac.uk

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