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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 sue.delmar@agsd.org.uk
Ann Phillips - Trustee ann.phillips@agsd.org.uk
Patrick Phillips - Deputy Chairman patrick.phillips@agsd.org.uk
Jayesh Pindolia - Trustee jayesh.pindolia@agsd.org.uk
Andrew Wakelin - Chairman chairman@agsd.org.uk
The following staff are based at the AGSD-UK office (hours Monday to Thursday 9am-5pm). Address & telephone.
Allan Muir - Development Director allan.muir@agsd.org.uk
Wendy Griffiths - Administrator wendy.griffiths@agsd.org.uk
Other AGSD-UK staff
Joan Fletcher, FCO/CNS - Family Support Officer (Joan is employed by the NHS under a grant from Genzyme Therapeutics Ltd to support Pompe families.) joan.fletcher@pompe.org.uk
The following are volunteer co-ordinators of the various GSD Types. We would welcome volunteers to assist with the GSD Types not listed here.
The work load of the GSD Type Co-ordinators varies according to the number of GSD Type members, their needs and the level of professional activity such as clinics, treatments, research, etc. These are voluntary roles and it may not be possible, or even relevant, for all co-ordinators to undertake all of the role description.
Sue Del Mar - GSD Type I (Von Gierke) Co-ordinator type1@agsd.org.uk
Kate Beuve - GSD Type I Children Co-ordinator type1children@agsd.org.uk
Allan Muir - GSD Type II (Pompe) Co-ordinator type2@agsd.org.uk
Esther James - GSD Type III (Cori) Co-ordinator type3@agsd.org.uk
Larissa Lowe - GSD Type IV (Andersen) Co-ordinator type4@agsd.org.uk
Andrew Wakelin - GSD Type V (McArdle) Co-ordinator type5@agsd.org.uk
Angie Shaw - GSD Type IX Co-ordinator type9@agsd.org.uk
The following are other volunteer appointments of the AGSD-UK.
Kate Phillips - Newsletter Editor editor@agsd.org.uk