GO ON A COURSE

AGSD-UK has run walking courses for a decade, and IamGSD ran its first walking course for people with muscle GSDs in California.
There are plans for many more. Stay tuned!
A four-minute testimonial video, recording the thoughts of participants on the walking course in Wales.
 

WALES 2010 TO 2020

A 16-minute video all about the fun and benefit of a walking course

AGSD-UK devised the walking courses for people with McArdle’s and Tarui’s. It originated in the awareness raising and fund raising “Walk over Wales” in 2010, with the first course run in 2011 and every year since, sometimes two courses in the year. Although called walking courses they in fact are so much more - including management techniques for daily living and comradeship.

 

Watch our two videos to get a feel for what a course is like.

 

UNITED STATES OF AMERICA

A video interview about the course with Jeremy Michelson

IamGSD board member Jeremy Michelson organized our first walking course in the US. It was held in Northern California. A total of 20 people attended, from age 15 to age 78, with the muscle glycogen disorders McArdle’s and Tarui’s, and a cross section from those who had very recent hospitalizations with rhabdomyolysis to those who were “hill fit”.

 

It was an international course - people came from USA, Canada and the UK. Walks were in the giant redwood forests and on the coast, culminating on the last day in a climb of 700 feet. Amongst the participants were the parents of the young people attending, and this was a great opportunity for them to compare notes.

 

We held a mini course for one day following the AGSD US conference in Houston, Texas, in September 2019.

 

Watch out for details of future courses in the US.

 

GERMANY

A happy group on SHG’s first walking course in 2019

IamGSD supported SHG, the German GSD association, in running their first ever walking course in September 2019 in Ofterschwang. 

 

SHG were planning another course for 2020, at the same location, 18 to 22 September, but it seems likely that the COVID-19 pandemic will put a stop to it.

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: 08/2020.

© IamGSD 2017 – 2020.

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