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

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

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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

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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

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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