We have launched a new page on this website to provide guidance through a flowchart. It helps you assess a bad episode and make your decision as to whether to attend hospital for urgent medical care. It guides you through the areas you need to think about to arrive at your decision. There is a link to download a PDF of the flowchart, which may be useful to print out, or to have on your phone for easy reference if ever required. Many thanks to all who helped, including our Scientific Advisory Board.

The AGSD-UK conference is returning to the physical format for 2023, after two years of online equivalents during the COVID-19 pandemic. Branded “The Main Event”, the conference will be held near Loughborough in the Midlands over the weekend of 20/21 May. There will be a significant program for McArdle’s.  We are awaiting news of the AGSD US conference starting 23 June and are not sure whether there will be a McArdle’s program.

We have published a new leaflet entitled “At peace with McArdle’s – ideas to help with mental well-being.” It is available now to browse online or to download a PDF. The leaflet draws on the experience of many McArdle people who perhaps have struggled with self-image, anxiety and/or depression, but have found their way to living positively with this disorder. When shared with family and friends, it will help them to understand the issues that we can face and guide them as to how they can help.

IamGSD is offering a new course in 2023 to train future leaders for the walking courses for people with McArdle’s and other muscle GSDs. It is hoped that this will lead to more courses being available in more countries around the world. A short presentation about the course is now available on our YouTube channel. For those that complete the course there will be a certificate, a manual, resources and support from IamGSD.

Two new papers on McArdle’s have recently been published. They are: “Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease” and “Toward An Understanding of Mcardle Disease: A Cross-Sectional Questionnaire Study”. IamGSD President, Dr Stacey Reason, was a co-author on the former paper and the lead author on the latter paper. Both papers have free public access and we are shortly adding details on our “Research papers” page.

There is a series of international conferences on glycogen storage disease held approximately every three years. IGSD2022 will be hosted by the AGSD US, starting on 20 October 2022. Due to the Covid pandemic this will be an entirely online event. The presentations will remain available until April 2023. See the conference website for more details and registration.