About The Archangel MLD Trust
The ArchAngel MLD Trust is an a registered charity
The ArchAngel MLD Trust was founded in 2014 by Ava’s family and family friends in their desire to help others facing this rare and terminal illness. The name ArchAngel is inspired by the eight-metre statue of Archangel Raphael which towers over the San Raffaele hospital in Milan, where Ava received her treatment.
The Trust is an unincorporated association governed by a constitution, Registered Charity Number 1157825. The Trust is run by volunteer charity trustees appointed to hold office for a fixed term of one year. Current Trustees are Sophie Deveson, Emma Gallagher (Treasurer), James Kerr (Secretary), Georgina Morton (Chair) and Rachael Wesson.
The Trust was set up to help people suffering from MLD in whatever way it can. This includes making grants to charities and organisations engaged in MLD research and medical care; awarding private grants to individual families for specialist equipment, therapies and professional carers; ArchAngel is also coordinating the work required to have MLD added to the UK’s Newborn Bloodspot (NBS) Screening Programme.
We are actively raising funds for our popular grant programme and vital newborn screening work.
