AMEND is a UK based charity that provides support to patients and their families suffering from rare genetic endocrine cancers. It was started about 10 years ago by a mother and daughter who both suffered from these conditions.In the 10 years the charity has developed substantially and now supports over 400 patients in 21 countries including USA, Europe and Australasia. They also represent the membership at a range of specialist medical conferences both at home and overseas. The charity produces ground breaking and well received documentation that is now used by the medical profession and patients alike. All this has been driven by a select band of dedicated volunteers.
The charity has expanded very quickly over the last few years and then in 2012 it received substantial funding from the Lottery Commission for its innovative project ‘Superhero.’ This project is designed to produce material to help children and young people understand and manage their condition. Again the ground breaking approach has attracted a great deal of interest from the medical profession.
The board of Trustees decided that it was appropriate at this point to devise a strategy for the next five years. The charity needed to address expansion and fundraising issues as well as governance.
AMEND called in a member of SGBA, Geofrey Steward, to act as facilitator for a strategy day. Patient members, volunteers and some trustees as well as the CEO attended the day which successfully resulted in a robust strategy being devised and subsequently approved by the whole Board