History of the
European Study Group on
Lysosomal Diseases (ESGLD)
by
Bryan Winchester
Chairman 1997-2007
Talk given after dinner at 17th Workshop
at Bad Honnef, Germany in 2009
Origins of ESGLD At a FEBS meeting in Amsterdam (1972?)
Don Robinson
Queen Elizabeth College
London University
(photo,1980)
Joseph Tager
B.C.P Jansen Instituut
Universiteit van Amsterdam
(photo,1980)
Idea for a Workshop dedicated to lysosomal enzyme defects
Origins of ESGLD
• Don Robinson – Discussed idea with Christian de Duve
– Identified Sponsor
• British National Kidney Research Foundation
– Fabry disease must be a major topic
Proposals for a European Study Group
on Lysosomal Enzyme Defects
and
Invitation to
Inaugural Meeting of a European Study Group
to be held at Cumberland Lodge in Windsor, UK
April 5-7th 1978
Autumn 1977
Letter from Don Robinson and Joseph Tager
Cumberland Lodge, Windsor, UK. 5-7th April 1978
“European”
Isolated and Simple Accommodation
Free Time and Bar
Local Culture and/or Musical Evening
Ethos of Workshop
Participants at 1st Workshop Cumberland Lodge, Windsor, UK. 5-7th April 1978 48 People from 31 Laboratories/Clinics and 10 Countries
Austria
Hans Kresse
Belgium
Jos Kint
Jules Leroy
Paul Tulkens
Auguste Van Elsen
Francois Van Hoof
France
Nicole Baumann
JP Farriaux
Freysz
Rebel
M-C Gübler
Pierre Mandel
Monique Mathieu
Jean Montreuil
Livia Poenaru
Gérard Strecker
Marie Vanier
Germany
Helene
Christamanou
Konrad Sandhoff
Kurt von Figura
Italy
Paolo Durand
Israel
Shimon Gatt
The Netherlands
Ph. de Groot
Hans Galjard
Leo Ginsel
Joop Hooghwinkel
Joseph Tager
Mick Hamers
Andre Schram
Spain
José Cabezas
Sweden
Lars Lundin
Per-Arne Õckerman
Alan Chester
Lars Svennerholm
United Kingdom
Philip Benson
Guy Besley
Sol Contractor
Helen Muir
Mike Dean
Des Patrick
Don Robinson
Norman Dance
Mark Carroll
A. Ejiofor
Bryan Winchester
Brenda Ryman
David Wise
Colin Wynn
• Present at 2009 Workshop
Scientific Programme of 1st Workshop
Cumberland Lodge, Windsor, UK. 5-7th April 1978
• The molecular basis and pathogenesis of Fabry’s disease
• Packaging of lysosomal enzymes with special reference to I-cell disease
• Current problems in diagnosis of lysosmal storage diseases - novel substrates
• Discussion groups
• Business meeting on 7th April 1978
Formation of
European Study Group on Lysosomal Diseases
(ESGLD)
Committee elected on 7th April 1978
Dr. Guy Besley (UK)
Dr. Paolo Durand (Italy)
Prof. Jules Leroy (Belgium)
Prof. Don Robinson (UK)
Dr. Konrad Sandhoff (Germany)
Dr. Gérard Strecker (France)
Prof. Lars Svennerholm (Sweden)
Prof. Joseph Tager (The Netherlands)
First Committee meeting in Amsterdam September 14-15th 1978
Chairman Secretary
Activities of ESGLD
• Exchange of Materials
• Visits of Researchers between Laboratories
• Newsletter
• Register of Laboratories
• Biennial Workshops
Newsletter
Issues 1-8
1979.1980,1981,1982,
1984,1986, 1988 and 1991
Superseded by Website
Contents
Reports from ESGLD committee
ESGLD Finances
Details of next Workshop
Comments on recent research
Requests for materials and reagents
Jobs in members’ laboratories
News of members Editor: Bryan Winchester
Register of Laboratories
1978-1985
in Newsletter
Hard copies produced in
1986,1988,1999-2000
and 2001
Superseded by Website
1978
31 Laboratories
in 10 Countries
1991
87 Laboratories
in 19 Countries
“Yellow Pages”
of LSDs
Biennial Workshops
• Organised by Members in spirit of first
workshop
• Presentations by members
• Invited speakers in closely related fields
• Non-Europeans could attend as:-
– Guest Speakers
– Researchers affiliated to member groups
– Company scientists
2nd ESGLD Workshop May 7-10th 1980
Sint-Trudo Abdji, Male, Belgium.
Jules Leroy (Antwerp)
Jos Kint
Auguste van Elsen
Organisers
Hospitality of the Reverend Sisters
of Sint-Trudo Abdji
Concert by group playing
18th century instruments
Woudschoten, Zeist ,The Netherlands
3rd ESGLD Workshop
November 7-10th, 1981
Organiser: Joseph Tager
13th ESGLD Workshop
September 20-23, 2001
Organisers
Otto van Diggelen,
Ben Poorthuis
Ron Wevers
Guest Speakers
Kurt von Figura
John Hopwood
National Park ‘de Hoge Veluwe’
and Kröller-Müller Museum
Concert by Chamber Group
“Sine Nomina”
4th Workshop September 23-26 1983
Abbaye de Royaumont, Asnières-sur Oise, France
En l’honneur du
Profeseur Jean-Claude Dreyfus
Organiser: Livia Poenaru (Picture,1995)
Concert by Quartet “Via Nova”
5th Workshop, September 27-30th, 1985
Haus Lerbach, Bergisch-Gladbach, Germany
Organiser: Hans Kresse
Evening Concert
6th Workshop, September 3-6,1987
Pavia, Italy, 1987
Golgi
Organiser: Bruno Berra
Guest Speakers
Bob Desnick
Elisabeth Neufeld
Kunihiko Suzuki
Guido Tettamanti
7th Workshop 21-24 September, 1989
Stiftung Kartause Ittingen, Switzerland
Organisers
Kurt Pfister
Ulrich Wiessmann
Ricco Gitzelmann
(Zurich)
Guest Speakers
Chet Whitley
Kunihiko Suzuki
Josef Brunner
Gillian Murphy
Robert Mason
Kai Simons
Former Carthusian (Charterhouse) Monastery
Meeting place for people of all cultures, nations
and religions based on monastic values such as
hospitality, care, education, reflection, spirituality
and closeness to nature.
8th Workshop October 24-27th 1991
Centre de Réunion des Pensieres,
Fondation Marcel Mérieiux, Annecy, France
Organisers:
Irène Maire
Marie-Thérèse Vanier
Veyrier-du-Lac
Guest Speaker: Roscoe Brady
Replacement Therapy in Gaucher Disease
Other Guests:Yoshiyuki and Kuni Suzuki
9th Workshop 7-10th October,1993
European Cultural Centre, Delphi, Greece
Guest Speakers
John Barranger
Edward Schuchmann
Organiser:
Helen Michelakakis
(Picture, 2005)
Local Folk
Dancing
EWGGD
Formation
10th Workshop September 16-19th 1995
Queens’ College Cambridge, UK.
Guest Speakers
John Hopwood
Bill Sly
Alesandra D’Azzo
Kunihiko Suzuki
Alexei Pshezhetsky
David Wenger
Organisers
Bryan Winchester
Liz Young
Newton’s
Mathematical
Bridge
The Backs at Cambridge
Wet punt trip for delegates along The Backs!
Good discussion in the bar!
11th Workshop September 18-21, 1997
Bad Deutsch-Altenburg, Austria
Organiser: Brunhilde Molzer
Guest Speaker: Kunihiko Suzuki
Archäol.Museum Carnuntinum
A duty of the
Chairman!
12th Workshop 23-26 September, 1999
Vidago Palace Hotel, Vidago, Portugal
Organisers
M Clara Sá Miranda
Rui Aguiar
Douro Valley
Porto
Guest Speakers
Peter Cresswell
Kunihiko Suzuki
John Barranger
Alesandra D’Azzo
Bob Desnick
14th Workshop September 18-21, 2003
Poděbrady, Czech Republic
Organisers
Milan Elleder
Jana Ledvinová
Martin Hřebiček
Bohemian Spa
on Elbe
Guest Speakers
Norma Andrews
Kurt von Figura
Concert in
St Barbora Cathedral
Kutna Horá
15th ESGLD Workshop September 15-18, 2005
Soria Moria Conference Centre, Oslo, Norway
Holmenkollen Ski Jump
Organisers
Ole-Kristian Greiner-Tollersrud
Vivi Ann Garibaldi (Tromsø)
Guest Speaker
John Hopwood
Viking Musueum Vigeland Park
Galleria Nazionale dell’Umbria
Museo Archeologica Nazionale dell’Umbria
16th ESGLD
Workshop
Perugia, Italy September 27–
30, 2007
3rd
announcement
Benedetto
Bonfigli
Pyrgi Tablets
16th ESGLD Workshop September 27-30, 2007
Perugia, Italy
Guest Speakers
Guido Tettamenti
Steve Walkley
Palazzo dei Priori
5* Brufani Palace Hotel
Organiser
Tommaso Beccari
17th ESGLD Workshop September 10-13th, 2009
Bad Honnef, Germany
Organiser
Volkmar Gieselmann
Guest Speaker
Bryan Winchester
18th ESGLD Workshop September 3-6, 2011
Langvik, Finland
Organisers
Anu Jalanka
Jaana Tyynela
Pirkko Heikinheimo
Aija Kyttala
Guest Speaker
Mart Saarma
19th ESGLD Workshop September 25-29, 2013
Seggau Castle, Leibnitz, Austria
Organisers
Eduard Paschke
Susanne Kircher
Michaela Brunner-Krainz
David Kasper
Barbara Plecko
Guest Speaker
Nan Yan
20th ESGLD Workshop September 30th- October 4th, 2015
TIGEM, Pozzuoli (Naples), Italy
Organisers
Andrea Ballabio
Graciana Diez Roux
Guest Speakers
Antony Galione
Timothy Cox
David Rubinsztein
Marja Jaattela
Kurt von Figura Telethon Institute of Genetics and Medicine
ESGLD Committee Chairmen
Don Robinson
1979-1983 Konrad Sandhoff
1985-1989
Kurt von Figura
1989-1997
Bryan Winchester
1997-2007
Hans Kresse
1983-1985
Volkmar Gieselmann
2007-2015
ESGLD Committee Secretary
1979-1983 Joseph Tager 1983-1997 Arnold Reuser
1997-2009 Otto van Diggelen
Treasurer
1980-1997 Bryan Winchester 1997-2001 Pertti Aula
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