Team
The FSHD UK Trustees are dedicated to raise awareness of FSHD and work diligently and tirelessly with the medical, research and other patient organisations to further the FSHD agenda.
Our Team
Andrew McCulloch Graham
Trustee
Rajeshri Badiani
Chairperson, Trustee
Ruth Hereford
Trustee
Patient Leads
The role of the Patient Engagement Leads at site was to help create communities at the hospital sites that are part of our group. This creates a solid foundation/layered approach for patients to connect with clinicians and patients. We also have Subject Matter Patient Leads who have special knowledge on a particular area of importance for our work.
Alexa Gardyne
Glasgow, Scotland
Derek Fisher
University College London
Leonardo Koeser
Patient Lead: Access Workstream
Liz Williams
FSH-MD Support Group UK
Richard Pulford
Robert Jones Agnes Hunt, Owestry
Catherine Taggart
Belfast, Northern Ireland
Tech
IT Website Support and Social Media
Derek Fisher
University College London
Shani Abass
Web UX Consultant
Clinicians
The clinicians in our group are world renowned in neuromuscular conditions and many specialise in FSHD. They voluntarily give up their time to be a part of this group and are fully dedicated to drive the FSHD agenda forward together with the patient community.
Dr. Emma Matthews
Reader of Neurology and Honorary Consultant Neurologist (Neuromuscular Disorder)
St. George’s University of London, London and Southern England
Enrico Bugiardini
Consultant Neurologist & Honorary Senior Research Fellow
National Hospital for Neurology and Neurosurgery – UCL Queen Square Institute of
Neurology, London and Southern England
Dr. James B. Lilleker
Consultant Neurologist and Honorary Senior Lecturer
Manchester Centre for Clinical Neurosciences, Northern Care Alliance NHS Foundation Trust
Dr. Maria Elena Farrugia
Consultant Neurologist and Lead for Adult Neuromuscular Disorders and Myasthenia
Institute of Neurological Sciences, Queen Elizabeth University Hospital
Dr. Tracey A. Willis
Consultant Paediatric Neurologist (Neuromuscular Disorders) and Visiting Professor Chester University
The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry
Dr. Grace McMacken
Academic Clinical Lecturer in Neurology
Queen’s University Belfast
Dr. Giorgio Tasca
Clinical Professor of Neuromuscular Science
John Walton Muscular Dystrophy Research Centre, Newcastle, North England
Dr. Channa Hewamadduma
Consultant Neurologist and Honorary Senior Lecturer
Sheffield Institute for Translational Neurosciences (SITRAN), University of Sheffield
Clinical Therapists
Physiotherapists and Occupational Therapists
Gita Ramdharry
Consultant Allied Health Professional; Honorary Associate Professor
UCLH, London
Jon Street
Clinical Specialist Physiotherapist; Doctoral Fellow
Sheffield
Meredith James
Clinical Specialist Neuromuscular Physiotherapist
Newcastle
Pamela Appleton
Occupational Therapist
St. George’s, London
Robert Muni Lofra
Consultant Physiotherapist, Honorary Clinical Senior Lecturer
Newcastle
Sheryl Chatfield
Clinical Specialist Neuromuscular Physiotherapist
Sheffield
Research
Basic Research Scientists
Dr. Alberto Malerba
Lecturer in Gene Therapy
Department of Biological Sciences, Royal Holloway University of London
Prof. Julie Dumonceaux
Professorial Research Fellow
Developmental Neurosciences Dept., GOS Institute of Child Health. UCL. London
Prof. Peter S. Zammit
Professor of Cell Biology
Randall Centre for Cell and Molecular Biophysics, King’s College London
Dr. Alberto Malerba
Lecturer in Gene Therapy
Department of Biological Sciences, Royal Holloway University of London
“Funding today fuels the discoveries and therapies of tomorrow. Together we are building the foundations for breakthroughs that once seemed impossible for our FSHD patients and community.”
Raj Badiani, FSHD UK Founder (Font Style: Hero Body)
How to Support Us
If you wish to kindly make a donation, please follow the JustGiving link below. If your organisation would like to engage in more involved or longer-term support, please contact us via the form in the footer.