AGSD-UK Conference 2010

The Conference will be in central London on weekend of 20th-21st November. More details soon.

 

Walk over Wales... every step counts
 2 July to 2 August 2010
Sponsored walk raising money for AGSD-UK. 210 miles. Details.

 

Walking with McArdle's - Wales
An opportunity to enjoy a week's walking holiday in Snowdonia and learn how best to cope with McArdle's. July 2011. Details.

 

 


 

AGSD-UK Conference 2010

The Conference will be in central London on weekend of 20th-21st November. More details soon.

 

Walk over Wales... every step counts
 2 July to 2 August 2010
Sponsored walk raising money for AGSD-UK. 210 miles. Details.

 

Walking with McArdle's - Wales
An opportunity to enjoy a week's walking holiday in Snowdonia and learn how best to cope with McArdle's. July 2011. Details.

 

 

The McArdle Handbook Project

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 from 12 January 2010. 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.

 

The McArdle Handbook Project

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 from 12 January 2010. 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.