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