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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 AGSD (UK) conducted an on-line survey of McArdle patients, instigated by Nick Owston. Patients from all around the world participated in June 2000. The collected data was analysed and written up into a detailed report which was published in November 2004.
The report provides an excellent insight into how the disease affects the lives of patients. It also provides statistical analysis of the results - for example, 94% of patients experience pain in everyday activities such as chewing, writing and cleaning their teeth.
A copy of the report, in PDF format, may be downloaded from this link.
Example page shown on right.