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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 with SMA Type 3

Dr. Enid Alston 

Adult affected by Adult Onset SMA

Veronika Anderson

Parent of a child with 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 with SMA Type 2

Dr. Felicity Boardman


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

Professor Katherine Bushby

Professor of Neuromuscular Genetics
Treat-NMD Project Co-ordinator

Angela Butcher

Parent of a child who had SMARD

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 with SMA Type 2

Crystal Clifford

Teacher of SEND

Steve Cocker

Parent of child who had SMARD

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

Nicola Crawshaw 

Parent of a child with SMA Type 2

Shirley Crosby

Neuromuscular Advisor

Linsie Delaney 

Physiotherapist

Dermot Dolan 

Regional Services Area Manager –
South – Whizz-Kidz

Tamara Eaton

Neuromuscular Advisor

Gail Eglon

Genetic Nurse Specialist

Mark Emms

Parent of an adult with SMA Type 2

Theo Emms

Adult with SMA Type 2

Carolyn Evans 

Retired Neuromuscular Nurse Specialist

Mary Fenton

Grandparent of children affected by SMA Type 2

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

Parent of a child with SMA Type 2

Amanda Ford 

Adult affected by Adult Onset SMA

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

NHS Regional Care Advisor

Jennifer Gardner
Doctor working in the field of medical genetics
 
Gemma Gardiner 

Adult affected by Distal SMA

Sarah Gates

Neuromuscular Care Advisor

Sally George

National Support Co-ordinator ARC
(Ante-natal Results and Choices)

Susan George

Parent of a child who had SMA Type 1

Louise Gethin

Former NHS Neuromuscular Care Advisor - now a Research Nurse

Professor Tom Gillingwater

Professor of Neuroanatomy
Scientist leading research into SMA

Suzanne Glover

Adult with SMA Type 2

Dr. Christian de Goede

Consultant Neurologist

Nikki Griffith

Parent of an adult with SMA Type 3

Sian Haigh

Parent of a child with SMA Type 2

Dr Mark Hamilton
Speciality Registrar in Clinical Genetics
 
Shivani Handa

Campaigns, Advocacy and Information Officer at Muscular Dystrophy Campaign

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 with 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
Professor Hanns Lochmuller

Professor of Experimental Myology
Honorary Consultant in Neuromuscular Genetics

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 with SMA Type 2

Eleanor McVeigh

Genetic Counsellor

Dr Kenneth McWilliam 

Consultant Paediatric Neurologist

Amanda Moffatt 

Parent of a child who had SMARD
Professor Francesco Muntoni

Hospital Consultant, Clinic-Academic Researcher
UCL Institute of Child Health and Great Ormond St Hospital

Dr. Alex Murphy 

Neuromuscular doctor, clinical care research correspondent for SMA Support UK

Hania Myers 

Parent of a child with 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 with SMA Type 3
Tracey Parkin

Grandparent of a child affected by SMA Type 1

Gillian Paton

Neuromuscular Care Advisor

Margaret Percy

Early Support Worker

Edwina Perkins

Specialist Care Advisor

Rachel Price 

Clinical Scientist – genetic diagnostic testing

Dr. Ros Quinlivan

Consultant in Neuromuscular Disease

Jasmine Rankin

Adult affected by 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

Agata Robertson

Clinical Trials Coordinator and former SMA Patient Registry Curator

Adam Rochester

Hospital Practitioner in Sleep and Ventilation

Jose Rogers

Adult affected by SMA Type 3

Alison Roper
Member of the public with no previous knowledge of SMA
 
Dr. Helen Roper

Consultant Paediatrician with expertise in neuromuscular conditions

Andrea Russell

NHS Neuromuscular Care Advisor

Heather Ryan 

Neuromuscular Care Advisor

Jane Sanders

Parent of a child with SMA Type 2

Dr Mariacristina Scoto 

Senior Clinical Research Associate

Reda Sebbata 

Parent of a child with SMA Type 1
Magda Sereda

Relative of someone with SMA Type 3

Emma Sheldon

Adult with SMA Type 2 and a parent

Lidia Sherwood

Parent of a child who has SMARD
Martyn Sibley

Adult with SMA Type 2

Professor Heather Skirton

Professor of Applied Genetics

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

Consultant Neurologist with expertise in SMA

Professor Kevin Talbot 

Consultant Neurologist

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

Former Advanced Neuromuscular Nurse Practitioner

Irene Tomkins 

Adult affected by Adult Onset SMA

Raymond Tracey

Adult affected by Adult Onset SMA

Shauna Walsh 

Adult with 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
Sarah Wilson

Parent of children with SMA Type 2

Andrew Wood 

Adult affected by Adult Onset SMA

Dr Elizabeth Wraige

Consultant Paediatric Neurologist

Elizabeth Young 

Clinical Scientist – genetic diagnostic testing

Dr Philip Young 

Researcher

 

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