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

Adpoted at 1st Committee Meeting in Amsterdam September 14-15th 1978

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

Founding Fathers

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

Future

of ESGLD

European?

Activities?

Sponsorship