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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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  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Marcel R. Wernard, Diagnosed 2016,  ALS Patients Connected,  The Netherlands

    Marcel R. Wernard, Diagnosed 2016, ALS Patients Connected, The Netherlands

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    unnamed

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Margreth Burger-Saile, Diagnosed 2011,  ALS Schweiz,  Switzerland

    Margreth Burger-Saile, Diagnosed 2011, ALS Schweiz, Switzerland

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Lombana, Spain

    Lombana, Spain

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Dick Dayton, USA

    Dick Dayton, USA

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Jon Newsome, USA

    Jon Newsome, USA

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

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