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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) is managed by a volunteer Board of Trustees elected by its members at the Annual General Meeting held each year as part of the Annual Conference. The current members of the board are listed below. If you would like to volunteer to help the charity in any capacity or would like to consider becoming a Trustee, please get in touch with the Chairman via the Contact us page.
For background information about our Trustees and officers please see our profiles page.
Sue Del Mar - Trustee and Treasurer treasurer@agsd.org.uk
Hugo Del Mar - Trustee and Type I (Von Gierke) Co-ordinator type1@agsd.org.uk
Allan Muir - Trustee and Type II (Pompe) Co-ordinator type2@agsd.org.uk
Ann Phillips - Trustee ann.phillips@agsd.org.uk
Jayesh Pindolia - Trustee jayesh.pindolia@agsd.org.uk
Clive Tonks - Trustee clive.tonks@agsd.org.uk
Andrew Wakelin - Chairman and Type V Co-ordinator type5@agsd.org.uk
The following are volunteer appointments of the AGSD (UK) but are not Trustees.
Kate Phillips - Secretary and Newsletter Editor editor@agsd.org.uk
Gianluca Venditto - Type III (Cori) Co-ordinator type3@agsd.org.uk
Christine Evans - Type IX Co-ordinator type9@agsd.org.uk