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International Alliance of ALS/MND Associations

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History

30th Anniversary of the International Alliance

Enjoy a video collage that includes photos from the beginning of the Alliance in 1992.

Early Recollections of the Formation of the Organisation

by Mavis Gallienne, Wendy Abrams, Rodney Harris and Peter Cardy, December 2012

The instigation of an international network to support organisations providing a range of services and promoting research into ALS/MND came about in 1987-88, when Peter Cardy commenced as the Chief Executive Officer of the MND Association of England, Wales and Northern Ireland.

The MNDA initiated an annual Research Meeting, which would later become the International Symposium on ALS/MND (the first was called ‘Who Is Out There Researching Into MND?’).

As a result of those early meetings, delegates from ALS/MND associations around the world came to England, and discussions began about forming an international organisation whose aim would be to support associations providing care and services to people living with ALS/MND and also to promote and stimulate research.  From these discussions, the Alliance was eventually born.

Official Notes – Alliance Founding Meeting, Solihull, Birmingham, 4-6 November 1992

Chairpersons of the Alliance since its inception in 1992 have been:

Eithne Frost of the Irish MNDA; Mavis Gallienne of MND Australia; Wendy Abrams of the Les Turner ALS Foundation, USA; Diane Heron of MNDA South Africa; Rod Harris of MND Victoria, Australia; Gudjon Sigurdsson of the MND Iceland; Jeffrey Deitch of the ALS Hope Foundation, USA; Carol Birks of MND Australia; Steve Bell of the Motor Neurone Disease Association of England, Wales and N Ireland; and, since December 2018, Calaneet Balas of ALS Association, USA.

 

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  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Fabio Carvalho

    Fabio Carvalho

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Art Eggert, USA

    Art Eggert, USA

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Willi Klein

    Willi Klein

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Peng Yi-Wen

    Peng Yi-Wen

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Roy

    Roy
    roy

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Paul Launer, USA

    Paul Launer, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • 83

    83

  • Fabio Correia

    Fabio Correia

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Mark Miller

    Mark Miller

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Hollister

    Hollister
    hollister

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Chen Chun-Chin

    Chen Chun-Chin

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Osiel Mendoza, Diagnosed 2016 ,  ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 , ALS Therapy Development Institute, USA

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

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