The spark that started the support group was in 1974 when two mothers, Ann Phillips and Sue del Mar, met at a conference about children living with metabolic conditions. They both had young children affected by Glycogen Storage Disease. In 1986 they founded the AGSD-UK and, as the saying goes, the rest is history!
1934 – 2020
Born five years before World War Two, Ann was raised in Nevada, USA, where she drove cattle with her father in the summer and attended school in Reno in the winter. She moved to California where she enjoyed the sciences and history and played the double bass.
Ann obtained a Masters in Physics from Marquette University in Wisconsin. Her thesis was on the structure of an organic molecule. Ann found employment as a physicist for the US Navy in California and won a scholarship to Imperial College in London, where she met her husband-to-be and settled in the UK in 1965.
Peter, Ann’s fourth child, was born in 1972. Six months of hospitalisations and a liver biopsy led to a diagnosis of Von Gierke’s disease (GSD1a) at Great Ormond Street Hospital. Ann read everything available. At a conference of what is now Children Living with Metabolic Disease (CLIMB) she met Sue del Mar and they decided to form AGSD-UK.
Before 1970 the medical profession would not allow families to meet, saying “each child is different and your child’s treatment will be unique”. Thanks to the pioneering of families like Ann’s, we now have conferences attended by patients, families, professionals and pharmaceutical companies.
Sue del Mar
After an education involving ten educational establishments around the world, Sue obtained a degree in mathematics at London University, then worked as a Sales Engineer with Hawker Siddeley until she got married. Later she became a science teacher.
Hugo, Sue’s second child, was born with GSD1a and her husband and she went through many of the traumas associated with having a GSD child.
Sue met Ann Phillips in 1974 and together they started AGSD-UK with a meeting in Sue’s house for just a few families. AGSD-UK was registered as a charity with a mission statement to support parents, raise the GSD profile within the medical profession, distribute information and fund research.
For very many years Sue was Treasurer and Membership Secretary. Initially there were only GSD1 and GSD3 members as they were almost the only GSDs diagnosed. Over the years the membership diversified into more GSDs.
Sue feels very lucky that Hugo was monitored from six months of age by Professor Wolff and Professor Leonard at Great Ormond Street Hospital until age twenty, well beyond their remit. Sue worked with Professor Elias, head of the Liver Unit at Birmingham Queen Elizabeth Hospital to set up an adult clinic. Hugo became their first patient.