GOLD, the Global Organisation for Lysosomal Diseases, was formed through the initiative of Lysosomal Diseases Australia, and described in their August 2002 newsletter. Here, we report on what has been happening with GOLD since then.
The formation of the organisation, took some time and effort on the part of the volunteer steering committee. GOLD was incorporated as a company, based in the UK in 2003. An Executive Director, Dr Ann Hale was appointed in January 2004.
GOLD was registered as a charity in England and Wales in March 2004. The next stage was to elect a Management Council, and prepare for GOLD’s first ever Annual General Meeting. Nominations for the Management Council were made by member organisations of GOLD and 11 Council members were elected. As GOLD is an inclusive organisation which brings together scientists, clinicians, patient organisation leaders and commercial organisations, an Industry Advisory Board appoints 2 members to the Management Council. A final Management Council member was co-opted at the first Council meeting.
Professor Michael Beck, Department of Paediatrics University of Mainz, Germany
Ms Rhonda P Buyers, National Gaucher Foundation, USA
Professor Robert Desnick, Mount Sinai School of Medicine, USA
Ms Jayne C Gershkowitz (Vice chair), National Tay Sachs & Allied Diseases Association, USA
Professor John Hopwood (Chair), Lysosomal Diseases Australia, Australia
Professor Edwin Kolodny, Division of Neurogenetics, NYU School Medicine, USA
Mrs Christine Lavery (Treasurer), Society for Mucopolysaccharide Diseases, UK
Professor William Sly, SLY LAB, Department of Biochemistry and Molecular Biology, USA
Professor Steven Walkley, Sidney Weisner Laboratory of Genetic Neurological Disease, USA
Ms Barbara Wedehase, National MPS Society, Inc, USA
Professor Bryan Winchester, Institute of Child Health (University College London), UK
Mr William Aliski, Transkaryotic Therapies, Inc
Dr C Geoffrey McDonough, Genzyme Corporation
Professor Roberto Giugliani, Hospital de Clinicas de Porto Alegre, Brazil
GOLD’s first AGM was held at the 8th International Symposium on Mucopolysaccharide and Related Diseases in Mainz, Germany. 44 Member Organisations from 17 countries were represented, including Wendy Boon and Vanessa Ede Scott from The Australian MPS Society.
It was agreed that the first priority for GOLD should be the development of the website, which is now online at www.goldinfo.org. New features on the GOLD website include:
A searchable database of LSDs: This summarises key facts about each LSD. There are links to patient organisations for further disease-specific information and support.
The GOLD membership directory: The directory is searchable on type of organisation (eg research lab, clinical centre, patient organisation, commercial organisation.)
Discussion forums: This is an area for discussion on any aspect of LSDs. The public forum is open to anyone, and anyone can add a topic in this area.
Information about GOLD’s Management Council: This contains brief biographical information about the Management Council of GOLD.
Online membership form: This area has a Q&A about membership of GOLD, an online application form for membership, or a downloadable form which can be faxed or posted.
Donations: Donations to GOLD can be made online using a secure server.
GOLD’s next aim is to develop an international patient registry for rarer lysosomal diseases which have little or no registry information available. This will be piloted with GM1 and GM2 (Tay Sachs, Sandhoff and AB variant) gangliosidoses and Niemann Pick type C disease.
The AGM this year will be held during the American Society of Human Genetics meeting, in Salt Lake City, Utah, USA from October 25 – 29. Three elected members of GOLD’s Management Council (Rhonda Buyers, Robert Desnick and Christine Lavery) are due to retire by rotation, and are eligible for re-election. Roberto Giugliani, co-opted to the Management Council is also due to retire, and is eligible for election or co-option. Further details regarding the AGM and Management Council elections will be issued by GOLD, and also posted to the website.