15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
Our survey closed on 6 June 2014 - watch out for the results.
We are interested in developing an “mHealth” tool to help people manage their McArdle’s. mHealth stands for Mobile Health. Our idea started as an App for a mobile phone, but it could also be a web site, particularly one designed to be used on a mobile phone. Or it might even integrate with an existing wrist-worn activity monitor. Some of the ideas would be to help you record activity (maybe a step counter) and perhaps diet, provide motivation and tips, and share results with others. (Example images from FitBit and Garmin.)
The story so far. The idea started simultaneously with Stacey Reason in Toronto and Jatin Pattni, the psychologist working with the McArdle Clinic in London. We have now joined forces and also have support from University College London Hospitals Trust. The McArdle Clinic’s Patient Advisory Panel has already had a discussion around this idea. We hope to attract funding for development.
A needs survey. It is really important that what is developed is something that McArdle people will find helpful and use. We are conducting a survey to understand the needs. This has been developed as part of Stacey’s work on her PhD and is being conducted jointly by the AGSD-UK and D’Youville College, New York.
THANKS TO ALL WHO COMPLETED OUR QUESTIONNAIRE.
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271