1999 Family Conference on Neuronopathic Gaucher Disease


Neuronopathic Gaucher's News Contents
Gaucher's News Contents


The weekend of 6-7 November 1999 saw the first ever Neuronopathic (Types 2 and 3) Gaucher Disease Family Conference in Northampton, UK. Ten families 31 adults and 23 children, gathered for an informal weekend to listen to a range of speakers from the Royal Manchester Children's Hospital, Great Ormond Street Children's Hospital, the Society for Mucopolysaccharide Diseases and Oxford GylcoSciences. Tanya Collin-Histed, Type 3 representative for the Gauchers Association, organised the event and reports on the weekend's talks and activies in a Special Supplement to Gaucher's News which is all here on the Neuronopathic Gaucher Disease Web Site.


The weekend programme was arranged in conjunction with all the families and the children had their own programme of activities which included arts and crafts, games, swimming, a puppet show and a magician..

After the families arrived and refreshments were served, the younger children attended a session of play, arts and crafts where they explored what it means to have Gauchers disease or to be a brother or sister of a child with the disease.

Aims

Meanwhile the adults heard Jeremy Manuel and Susan Lewis, Chairman and Secretary of the Gauchers Association, welcome them to the Conference. Jeremy Manuel said: 'It is the Association's wish that this meeting will be the first of many annual Neuronopathic Gauchers Disease conferences.

It is important that all families work together to meet the aims of the Association which are to support each other and work together to improve the lives of those with Gauchers disease and their families,' he said.

The Neuronopathic Gauchers Disease Family Conference was funded exclusively by two charities, the Gauchers Association and the Helen Manuel Foundation.

The first ever Neuronopathic Gauchers Disease Family Conference was a great success and closed with families having made new friends and having learnt new facts about their child's disease in an environment with which they felt comfortable and a sense of belonging.


Neuronopathic Gaucher's News Contents
Gaucher's News Contents

Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000