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.

GO ON A COURSE

IAMGSD ran its first walking course for people with muscle GSDs in California, led by board member Jeremy Michelson.
There are plans for many more. Stay tuned!

A video interview about the course with Jeremy Michelson.

CALIFORNIA

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 one day following the AGSD US conference in September 2019. Watch out for details of future courses in the US.

GERMANY

IamGSD supported SHG, the German GSD, in running their first ever walking course in September 2019 in Ofterschwang.  They are planning another course for this year, at the same location, dates: 18 to 22 September.

 

All about the fun and benefit of a walking course.

WALES 2010 TO 2019

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 the video to get a feel for what a course is like.

Course participants talk about their experiences