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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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  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Dick Dayton, USA

    Dick Dayton, USA

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Shay Rishoni

    Shay Rishoni

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Liam Dwyer, England

    Liam Dwyer, England

  • Willi Klein

    Willi Klein

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Ali Var, Turkey

    Ali Var, Turkey

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Dad

    Dad

  • IMG_2658

    IMG_2658

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Cath Muir

    Cath Muir
    Cath

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

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

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

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