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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 international GSD community is very well served by GSD Net. It is a FREE email mailing list system which enables communication between people with all types of glycogen storage disease. There are about 500 people registered from all around the world, including some professionals. It is a great way to ask a question and find other people who have already experienced the same issue. Or just share what you are going through. To make a 'post' you simply send an email to the server and it is sent out to everyone on the list. And of course you receive what everyone else posts. If you wish, you can restrict the emails you receive to just those concerning your own GSD type. To start the sign up process click here. This will automatically create an outgoing email for you, then:
In due course you will receive an email response from the server with instructions on what to do next.