What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: March 2020.

© IamGSD 2017 – 2020.

Please donate online to support our work.

Register with us for special access to the web site, download PDFs and be kept in touch by email.

SCIENTIFIC
ADVISORY BOARD

IamGSD is very pleased to have appointed a Scientific Advisory Board (SAB) under the chairmanship of main board member Dr Jared Schreiner. The SAB offers advice upon request in regard to the information we provide for patients and professionals, answers specific questions about the conditions we cover, and consults on our support for proposed research.  
Dr. Jared Schreiner

Chairman, Scientific Advisory Board

Jared is a member of the IamGSD board and also Chairs our Scientific Advisory Board. Please see his biographic details on our page for the IamGSD board.

Prof. Ros Quinlivan

Consultant in Neuromuscular Disease

Ros Quinlivan obtained a BSc in psychology before going on to study medicine at UCL. Her post-graduate training was in paediatrics at London teaching hospitals.

 

She was the first clinical research fellow in neuromuscular disease at Guy's Hospital, working across paediatric and adult specialties. She was awarded an MD by the University of London for her research into the cardiomyopathy of Duchenne and Becker Muscular Dystrophy.

 

She was appointed a consultant in 1995 in the West Midlands, where she was Director of the Wolfson Centre for Inherited Neuromuscular Disease.

 

She moved to UCLH in 2010, where she is clinical lead for the nationally commissioned service for McArdle disease and related disorders. She also leads the transition service for adolescents and young adults with neuromuscular disease at GOSH and the National Hospital for Neurology and Neurosurgery, Queen Square. 

 

Ros Quinlivan is also joint co-ordinating editor for the Cochrane Neuromuscular Disease Group.

Prof. Ronald Haller

Consultant in Neuromuscular Disease

Ron Haller is Professor of Neurology and Neurotherapeutics at UT Southwestern Medical Centre in Dallas, Texas.

His first degree was in English at Stanford University, California, in 1964, followed by medicine in Seattle, then internal medicine and neurology with a fellowship in neuromuscular disease at John Hopkins School of Medicine Baltimore, 1974-76.

Prof. Haller’s research interests include exercise physiology, metabolic disorders of muscle and neuromuscular disease. He has published around 200 research papers.

 

He is the longest established current researcher in McArdle disease, having published on many aspects of the condition.

Dr. Richard Godfrey

Exercise Physiologist

Richard Godfrey is a Senior Lecturer in Sports Coaching and Human Performance at Brunel University. His PhD was on growth hormone response and its association with lactate, which introduced him to McArdle Disease. His interests are sports performance and health-related aspects of exercise. He has published on: heat; hydration; jet lag; bone health; physiology of rowing, altitude, exercise training and triathlon; detraining; sleep and immune function.

Richard joined Brunel’s College of Health and Life Sciences after 12 years at the British Olympic Medical Centre where he was Chief Physiologist.

His involvement with McArdle Disease grew in 2011 when he joined the bi-weekly McArdle clinics at the MRC Centre for Neuromuscular Disease. He supervises exercise assessments, undertakes studies and is the lead on the research programme. 

Richard was made a Fellow of the British Association of Sport and Exercise Sciences (BASES) in September 2010.