The foundation of the Gauchers Association
In May 1991, eight English sufferers (or their parents) met in a north London community hall. The meeting was organised by Jeremy Manuel, who with his family, had founded the Helen Manuel Foundation in memory of their mother who had suffered from Gaucher disease. Of the patients who attended, none knew each other (except for two sisters) although they lived within a radius of a few miles. Professor Victor Hoffbrand, a consultant haematologist at the Royal Free Hospital in London, described the symptoms of Gaucher disease, which several of the patients recognised but had not realised were part of their condition. He spoke about the new enzyme replacement therapy that was due to be licensed in the USA and Professor Mia Horowitz, then from the Weitzmann Institute of Science (and now of Tel Aviv University in Israel) spoke about the genetic basis of the disease and the mutations that had been discovered.
After the meeting the sufferers and parents exchanged stories. One mother, who had been told that her daughter would not live to the age of 20, met a married woman with Gaucher disease who had children and a career. A recently diagnosed man in his 50s met two sisters, both of whom had been diagnosed 30 years earlier in their teens. The sense of relief of those who were able to exchange their life stories was obvious and it was agreed that more information and emotional support was needed. This meeting led to the foundation of the UK Gauchers Association.