15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
A guide to the scientific and medical research into McArdle Disease explained in plain English
Kathryn Wright has begun a project to write a guide/handbook to McArdle disease which will explain the cause, method of inheritance and history of McArdle disease, and current and future treatments in layman's terms.
Kathryn Wright is a scientist and has recently completed four years of a PhD creating cell models of McArdle disease. (You may have met her at the McArdle Clinic at Oswestry or at our Annual Conference.) During her PhD studies she read many of the papers published on McArdle disease, building an up-to-date knowledge of current scientific and medical research on McArdle disease. Almost all the information available is in technical language, aimed at medical or scientific professionals. The purpose of this project is to “translate” this into plain English to provide McArdle patients and other interested people with information on McArdle disease.
This project is being funded by a grant from the Vodafone Foundation under their "World of a Difference" programme. This grant will pay for Kathryn to work for the AGSD-UK for two months. At the end of the two months, Kathryn will provide AGSD-UK with a well-written, easy-to-understand report on McArdle disease, which will be published on the AGSD-UK website and be made available as a free download throughout the world.
Kathryn would like McArdle patients to suggest which topics she should cover, and what questions she should answer in this guide/handbook. Please contact Kathryn via this link, where she is posting a blog about her work. Alternatively, contact her via the Facebook group McArdle's Disease or via GSD Net with suggestions.
Update August 2011: Kathryn Wright is now Kathryn Birch. The handbook was published on 1 August and is now available for order through this web site. Click here. (It is also available as a PDF for personal use only without charge but with a suggestion for a donation.)
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271