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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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  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Liam Dwyer, England

    Liam Dwyer, England

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

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

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Roy

    Roy
    roy

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

  • David Bishop

    David Bishop

  • Wilfried Leusing

    Wilfried Leusing

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Jon Newsome, USA

    Jon Newsome, USA

  • Michael Lee, Australia

    Michael Lee, Australia

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Ann Nicol

    Ann Nicol

  • Nicholas (Nic) Bowman, MND Association of South Africa,  Diagnosed 2016,  Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • 83

    83

  • Fabio Carvalho

    Fabio Carvalho

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Ali Var, Turkey

    Ali Var, Turkey

  • Chen Chun-Chin

    Chen Chun-Chin

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Mark Miller

    Mark Miller

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Steve

    Steve

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Shay Rishoni

    Shay Rishoni

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

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

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

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

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