Our regular annual Global Walking Week has been rescheduled to autumn 2023, to give more time to promote this amongst the community, and to put in place fundraising efforts which we hope many people will support. The week is now scheduled for Saturday 16 September to Friday 22 September 2023. Please follow the link to more details and sign up to the week!

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.

Queensland University of Technology in Australia is conducting research into the effectiveness of current nutritional guidelines in the management of McArdle’s. They are looking for people who can exercise for 20 minutes under different nutritional states. At present, there will be two sites, one in Brisbane and one in Melbourne. Download participant information sheet, then contact principal researcher Sam Torrens:

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.

IamGSD möchte, dass jeder mit einer Muskel-GSD dem CoRDS-Register beitritt, das einen speziellen Abschnitt für uns hat (diejenigen in Europa können das Euromac-Register verwenden). Bitte lesen Sie CoRDS, hören Sie den Podcast und treten Sie dann online der Registrierung bei.

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.