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

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

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Ian Roberts

    Ian Roberts

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Ali Var, Turkey

    Ali Var, Turkey

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Lombana, Spain

    Lombana, Spain

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

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

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

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

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

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

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Fabio Correia

    Fabio Correia

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Liam Dwyer, England

    Liam Dwyer, England

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

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

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

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Liam Dwyer, England

    Liam Dwyer, England

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Claire Garry, USA

    Claire Garry, USA
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  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Shay Rishoni

    Shay Rishoni

  • Roy

    Roy
    roy

  • Paul Launer, USA

    Paul Launer, USA

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