OUR ANNUAL REPORTS

We make an annual report each year on our activities and brief details are posted here. For the full report please contact us. 

A learning point on a walking course in California

 2019 

We reflect on all that IamGSD has achieved over the past 12 months.  

  • Provided consultation to researchers (RENEO) who are planning a clinical trial in McArdle disease – Feb 2019

  • Hosted the annual Global Walking Week – May 2019

  • Presented at the annual German GSD Conference – May 2019

  • Hosted the annual Walking Course in Wales - July/Aug 2019

  • Led walking course for people with McArdle’s in Germany, organised by German support group SHG – Sept 2019

  • Presented at the AGSD US - Patient and Medical conference (Houston) - Sept 2019

  • Presented at the AGSD UK conference - Oct 2019

  • Collaborated with Sanford Health to develop a Muscle GSD Patient Registry - Nov/Dec 2019 

Beyond these activities, the IamGSD Directors have also kept busy working on a variety of new and ongoing projects - such as drafting clinical practice guidelines for GSD 5 & 7, maintaining our website, and updating publications... to name just a few.

 2017/18 

Our first year was very much concerned with planning and establishing our policies and campaigns ready for our launch:

  • Soft launch of IamGSD on social media - Febuary 2017

  • Website Development - January–April 2017

  • Producing exhibition stand and leaflet – May 2017

  • Official launch of IamGSD – June 2017

Later in 2017, and in 2018, work was carried out within or declared Campaigns:

Promoting the Standards of Care

  • Presented at International GSD Conference (Groningen) - June 2017

  • Produced “Living well with McArdle Disease” video - August 2017 

  • Presented at the Association for Glycogen Storage Disease (AGSD) US -

  • Patient and Medical conference (Chicago) - Sept 2017

  • Produced “At School with McArdle’s” leaflet for school staff - Oct 2017

  • Presented at the AGSD UK conference - Oct 2017

  • Produced “Living with McArdle’s” booklet with in-depth advice - Nov 2017

  • Produced “At Work with McArdle’s” leaflet for employers - Nov 2017

  • Produced “At Home with McArdle’s” leaflet for friends and family - Nov 2017

  • Published paper - ‘Centre of Expertise: Comprehensive Care for patients with McArdle disease’ - Feb 2018

  • Presented at annual German GSD conference – April 2018

  • Presented at the AGSD UK conference - Oct 2018

Encouraging Regular Exercise

  • Annual Global Walking Week – May 2017

  • Hosted the annual Walking Course in Wales - July/August 2017

  • Hosted a Walking Course in the US (California) - Oct 2017

  • Made video reporting on the US walking course - Jan 2018

  • Annual Global Walking Week – May 2018

  • Hosted the annual Walking Course in Wales - July/Aug 2018

Contributing to Research

  • Stacey Reason joined the AGSD US Scientific Advisory Board (SAB) to support muscle GSD agenda - Oct 2017

  • Co-hosted a ‘Nutrition Summit’ on the future of nutrition in McArdle disease to inform research with Key Opinion Leaders (KOL), London, 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: 09/2020.

© IamGSD 2017 – 2020.

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