The German was machine translated and is now being reviewed and corrected.
PRESENTATIONS
These presentations were given by IamGSD board members and others at conferences and workshops around the world.
We have presentations on the management of muscle GSDs and on research topics. They are listed with a note of speaker, conference and date.
Annual family GSD conference, with extensive workshop on muscle GSDs, in particular McArdle disease
AGSD US
Annual family GSD conference, usually supported by IamGSD board members to run a muscle GSD workshop.
International GSD conferences, covering hepatic and muscle GSDs. About every three years in different countries.
PRESENTATIONS – MANAGEMENT
Presentations on the management of muscle GSDs.
Advocacy and McArdle disease
It is so important to be able to advocate for yourself, or have a family member do it for you.
Patient Advocate
Terri Chambers
AGSD US Conference
September 2019
Understanding McArdle disease
What it is, what happens, “second wind”, symptoms, impact and management strategies.
IamGSD President
Dr Stacey L Reason
AGSD US Conference
September 2019
Patient Liaison Panel report, UK McArdle Clinic
Report on the clinic and the research programme at the UK McArdle Disease Service, London.
AGSD-UK McArdle Coordinator
Andrew Wakelin
AGSD UK conference
October 2019
Pain? What pain?
Avoiding and managing pain in McArdle disease. Pain is not a given part of the condition.
McArdle Coordinator
AGSD-UK
Andrew Wakelin
AGSD US Conference
September 2019
Top Tips
Key underlying factors, immediate ATP, the four Rs, “second wind”, the 6-second rule, 30 for 80, rest before risk and the McArdle Mantra
AGSD-UK McArdle Coordinator
Andrew Wakelin
AGSD US Conference
September 2019
Adverse Events: Management and Recovery
The causes, treatments, risks and outcomes of an episode of rhabdomyolysis.
IamGSD President
Dr Stacey L Reason
IGSD2017 Conference
June 2017
Walking with McArdle’s – from 2010 to now
An account of the development of the walking courses over the last 7 years, with some great photos. It covers the successes and the benefits, plus the start of the Children & Parents event.
McArdle Coordinator
AGSD-UK
Andrew Wakelin
IGSD2017 Conference
June 2017
Fuelling our muscles: carbohydrate, protein, healthy fat.
An introduction to each macro nutrient and encouragement to see what works for you.
IamGSD President
Dr Stacey L Reason
AGSD US Conference
September 2019
What can patients know better than doctors?
Patients have first hand experience of the condition, they understand it from a practical viewpoint.
McArdle Coordinator
AGSD-UK
Andrew Wakelin
IGSD2017 Conference
June 2017
PRESENTATIONS – RESEARCH
Presentations on research relating to muscle GSDs.
What does the future hold?
Patient registries, gene therapy, clinical practice guidelines, and quite a bit more!
IamGSD President
Dr Stacey L Reason
AGSD US Conference
September 2019
The effect of Triheptanoin in adults with McArdle’s
One man’s experience of participation in a trial of an oil/drug, travelling from UK to Denmark.
UK McArdle patient
David Thompson
AGSD-UK Conference
October 2018
McArdle disease research update
More research, multi-centre trials, patient registries, current studies, strength training, third wind, ketogenic studies and gene therapy.
AGSD-UK McArdle Coordinator
Andrew Wakelin
AGSD US Conference
September 2019
Sodium Valproate – first drug trial in McArdle’s
A brief report and outcomes on the Sodium Valproate trial in the UK and Denmark.
Neuromuscular specialist
Dr Renata Scalco
AGSD-UK Conference
October 2018