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Neuronopathic Gaucher Disease
Earlier this year I read an article in the National Gaucher Foundation's Newsletter about Gregory and Deborah Macres who live in the USA and whose four year old son Gregory had lost his battle for life in 1997 due to complications of a bone marrow transplant, writes Tanya Collin-Histed Gregory had Type 3 Gauchers disease.
The story described the battle that Gregory and Deborah Macres had been through and how following their son's death they had decided to honour his memory by raising the profile of, and raising research funds for Types 2 and 3 Gauchers disease in order to help other families throughout the world.
I faxed Gregory and Deborah explaining how I shared their views on improving communication about Types 2 and 3 Gauchers disease between families and professionals and indicated that I would be interested to work with them in their plight.
Working with Gregory and Deborah has been inspiring, their commitment and dedication in continuing their involvement in an area that must be very painful to them has given me the strength and energy to continue even during the bad times.
In honour of their son, Gregory and Deborah set up a fund to raise money for research into Types 2 and 3 Gauchers Disease (Children's Gaucher Research Fund).
A scientific advisory board of doctors from the United States and Sweden will set long term priorities for the allocation of the funds. To date the Children's Gaucher Research Fund stands at $100,000.
The scientific advisory board will meet for the first time in June 1999 to discuss the fund at the COGENT (Correction of Genetic Diseases by Transplantation) Conference in Minneapolis, USA.
In order to publicise the fund, Gregory and Deborah publish a quarterly newsletter called Helping Hands which is used as an information and fund raising tool and is distributed to individuals and corporations throughout the United States.
In an attempt to widen the distribution of Helping Hands into Europe, I have written an article for the newsletter and will help Gregory and Deborah to further the distribution. By contacting parents in the UK and other countries and through other European Patient Associations, I hope to encourage them to receive and publicise the newsletter and the fund.
Neuronopathic Gaucher's News
Gaucher's News Contents
Source: Gaucher's News July 1999. © Copyright Gauchers Association 1999.