Information Publications Writers and Reviewers Panel

Our publications are carefully researched and reviewed. We are grateful for the support of the following health and social care professionals, medical experts and members of the SMA community.

Ally Allen

Parent of a child who has SMA Type 3

Dr. Enid Alston 

Adult affected by Adult Onset SMA

Veronika Anderson

Parent of a child who has SMA Type 2

Caroline Bates

Solicitor specialising in wills, trusts, powers of attorney and vulnerable adults

Kerstin Bates

Parent of a child who had SMARD

Charlotte Bestwick 

Parent of a child who has SMA Type 2

Dr. Felicity Boardman


Health sciences researcher with specific research interest in the issues of reproductive choices for families affected by SMA

Angela Butcher

Parent of a child who had SMARD

Amy Cameron

Parent of a child who has SMA Type 1

Marilyn Cannon

Adult who has SMA Type 3

Michelle Chatwin
Consultant Physiotherapist in Respiratory Support
 
Dr. Anne-Marie Childs

Consultant Paediatric Neurologist, leading a paediatric neuromuscular team

Sheila Clayton

Senior Paediatric Physiotherapist

Stephanie Cleary

Parent of a child who has SMA Type 2

Crystal Clifford

Teacher of SEND

Steve Cocker

Parent of child who had SMARD

Ellen Cooper

Former member of staff

Trish Cooper
Member of the public with no previous knowledge of SMA
 

Nicola Crawshaw 

Parent of a child who has SMA Type 2

Shirley Crosby

Neuromuscular Care Advisor

Linsie Delaney 

 Paediatric Physiotherapist

Tamara Eaton

Paediatric and Adult Neuromuscular Care Advisor

Gail Eglon

Genetic Nurse Specialist

Mark Emms

Parent of an adult who has SMA Type 2

Theo Emms

Adult who has SMA Type 2

Mary Fenton

Grandparent of child who has SMA Type 2

Janice Fiddler Neuromuscular Care Advisor, Specialist Neuromuscular Physiotherapist, Speciallist Palliative Care Physiotherapist
Susan Fisher

Parent of a child who has SMA Type 2

Amanda Ford 

Adult affected by Adult Onset SMA

Emma Freeman
Parent of a child who had SMA Type 1
 
Susan Gallagher

Paediatric Neuromuscular Regional Care Advisor

Gemma Gardiner 

Adult affected by Distal SMA

Jennifer Gardner

Doctor working in the field of medical genetics

Sarah Gates

Neuromuscular Care Advisor

Sally George

National Support Co-ordinator ARC
(Antenatal Results and Choices)

Susan George

Parent of a child who had SMA Type 1

Professor Tom Gillingwater

Professor of Neuroanatomy,
Scientist leading research into SMA

Suzanne Glover

Adult who has SMA Type 2

Dr. Christian de Goede

Consultant Neurologist

Nikki Griffith

Parent of an adult who has SMA Type 3

Dr Mark Hamilton
Speciality Registrar in Clinical Genetics
 
Jack Hassan

Young adult who has SMA Type 2

Peter Hartley

Adult affected by Adult Onset SMA

Pippa Harwood 

Community Nurse and Clinical Supervisor. Previously worked as a Health Visitor.

Dr. David Hilton-Jones

Consultant Neurologist

Jackie Illot

Grandparent of a child who has SMA Type 2

Matthew Irwin 

Parent of a child who had SMA Type 1

Margaret Jackson

Specialist Neuromuscular Care Advisor

Kelly Jones 

Parent of a child who has SMA Type 1

Robert Muni Lofra

Clinical Specialist Neuromuscular Physiotherapist

Sue Manning

Specialist Neuromuscular Care Advisor

Dr. Chiara Marini-Bettolo

Consultant in Inherited Muscle Disease

Dr Catherine McDougall 

Consultant Respiratory Paediatrician

Dr. Samuel McGinley 

Registrar in General Practice

Hannah McKeown

Parent of a child who has SMA Type 2

Eleanor McVeigh

Registered Genetic Counsellor

Dr Kenneth McWilliam 

Consultant Paediatric Neurologist

Amanda Moffatt 

Parent of a child who had SMARD
Professor Francesco Muntoni

Consultant Paediatric Neurologist, Director of Dubowitz Neuromuscular Centre, GOSH and clinic / academic researcher, UCL Institute of Child Health

Dr. Alex Murphy 

Clinical Research Assistant, Neuromuscular Doctor, Clinical Care Research Correspondent for SMA UK

Hania Myers 

Parent of a child who has SMA Type 3

Jane O'Connor

Neuromuscular Care Advisor

Roisin O’Neill 

Parent of a child who has SMA Type 1

Dr Christina Parfitt 

Paediatric Registrar

Mae Park 

Parent of a child who had SMA Type 1

Louise and Kevin Parker  Parents of children who have SMA Type 3
Tracey Parkin

Grandparent of a child who had SMA Type 1

Gillian Paton

Neuromuscular Care Advisor

Margaret Percy

Early Support Worker

Rachel Price 

Clinical Scientist – genetic diagnostic testing

Dr. Ros Quinlivan

Consultant in Neuromuscular Disease, Lead for transition, GOSH and National Hospital for Neurology and Neurosurgery

Jasmine Rankin

Adult who has SMA Type 2

Rute Robalo

Parent of a child who had SMA Type 1

Dr. Stephanie Robb

Consultant Paediatric Neurologist with a special interest in Neuromuscular Disorders

Adam Rochester

Hospital Practitioner in Sleep and Ventilation

Jose Rogers

Adult who has SMA Type 3

Alison Roper
Member of the public with no previous knowledge of SMA
 
Andrea Russell

NHS Neuromuscular Care Advisor

Heather Ryan 

Neuromuscular Care Advisor

Jane Sanders

Parent of a child with SMA Type 2

Dr Mariacristina Scoto 

Neuromuscular Specialist at GOSH and Senior Clinical Research Associate

Reda Sebbata 

Parent of a child who has SMA Type 1
Magda Sereda

Relative of someone who has SMA Type 3

Emma Sheldon

Adult who has SMA Type 2 and is a parent

Lidia Sherwood

Parent of a child who has SMARD
Martyn Sibley

Adult who has SMA Type 2

Dr. James Sleigh Research Fellow, UCL Queen Square Insitute of Neurology, Scientific Research Correspondent for SMA UK
Lee Stamford 

Parent of a child who had SMA Type 1

Vicky Stamford 

Parent of a child who had SMA Type 1

Jason Storr 

Parent of a child who has SMA Type 1

Professor Volker Straub

Harold Macmillan Professor of Medicine, with expertise in SMA

Professor Kevin Talbot 

Head of Clinical Neurology and Professor of Motor Neuron Biology

Dr Sadie Thomas-Unsworth Highly Specialist Clinical Psychologist with expertise in neuromuscular conditions and palliative care
Irene Tomkins 

Adult who has Adult Onset SMA

Raymond Tracey

Adult who has Adult Onset SMA

Shauna Walsh 

Adult who has SMA Type 2

Emma Waters

Advisory Teacher for Physical Disabilities

Michelle Webber 

Paediatric Dietitian

Sue Wensley

Member of the public with no previous knowledge of SMA

Siobhan Whitfield

Parent of a child who had SMA Type 1

Dr Charlie Williams 

Adult who has SMA Type 2
Mark Wilson

Parent of a child who has SMA Type 2

Sarah Wilson

Parent of children who have SMA Type 2

Jordanne Wozencroft

Young adult who has SMA Type 2

Dr Elizabeth Wraige

Consultant Paediatric Neurologist

Elizabeth Young 

Clinical Scientist – genetic diagnostic testing

Dr Philip Young 

Researcher and Senior Teaching Fellow

 

Former / Retired Reviewers

Connection to SMA
(at time of reviewing)
Professor Katherine Bushby

Professor of Neuromuscular Genetics and TREAT-NMD Project Coordinator (now retired)

Dermot Dolan

Regional Services Area Manager, Whizz-Kidz
(former role)

Carolyn Evans

Neuromuscular Nurse Specialist (now retired)

Louise Gethin

NHS Neuromuscular Care Advisor
(former role - now a research nurse)

Shivani Handa

Campaigns, Advocacy and Information Officer at Muscular Dystrophy UK (former role)

Professor Hanns Lochmuller

Former Professor of Experimental Myology, Honorary Consultant in Neuromuscular Genetics (former role)

Agata Robertson

UK SMA Patient Registry Curator (former role)

Dr. Helen Roper

Consultant Paediatrician with expertise in Neuromuscular Conditions (now retired)

Professor Heather Skirton

Professor of Applied Genetics (now retired)

Kathryn Titchen

Advanced Neuromuscular Nurse Practitioner
(former role)

Andrew Wood

Adult originally diagnosed with SMA
(later rediagnosed)