HARRISON FORD IN GSD FILM
Extraordinary Measures starring Harrison Ford, based on the book "The Cure" it tells the story of John Crowley and his part in funding the development of an enzyme-replacement therapy for people with Pompe Disease. Two of John's children suffer from Pompe (GSD Type II). UK release 26th February.

 

MCARDLE HANDBOOK PROJECT
Thanks to the Vodafone Foundation Kathryn Wright is preparing a Handbook for people with McArdle's. More details here.

 


 

HARRISON FORD IN GSD FILM
Extraordinary Measures starring Harrison Ford, based on the book "The Cure" it tells the story of John Crowley and his part in funding the development of an enzyme-replacement therapy for people with Pompe Disease. Two of John's children suffer from Pompe (GSD Type II). UK release 26th February.

 

MCARDLE HANDBOOK PROJECT
Thanks to the Vodafone Foundation Kathryn Wright is preparing a Handbook for people with McArdle's. More details here.

 

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.