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

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: 07/2020.

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