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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 Board of Trustees meets 4 times per year on the first Saturday of February, May, September and November. For 2010 these are: 6 February, 1 May, 4 September and 6 November.
The minutes of the meetings of the Board of Trustees of AGSD (UK) are available here. These are PDF files and will either open in a new window or download depending on how your browser is configured. Minutes should not be taken as fully correct until after the the following meeting when any corrections will be been noted and they will be approved. If you have any questions please contact the Chairman using the Contact us form.
14 November 2009 - Board Meeting 9 October 2009 - Board Meeting 21 August 2009 - written resolution 9 August 2009 - Board Meeting
Previous to August 2009 the charity was unincorporated and the minutes were not made publicly available.