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International Alliance of ALS/MND Associations

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Governance Committee

The role of the International Alliance of ALS/MND Associations’ Governance Committee is to review and report to the Board on items and areas within it’s remit and to develop and monitor procedures to ensure the organisation’s legal and regulatory compliance.

Committee Members

David Ali

David Ali

David says it is a real privilege to be elected to the Board of the International Alliance. He brings 25 years’ experience as an executive and non-executive Director on government and not-for-profit boards. Apart from MND, he is currently Treasurer of Communities That Care Australia. In his day job, he is the CEO of a not-for-profit membership-based professional peak association so he understands the importance of member-based organisations like the International Alliance. His professional background is in social policy (health, human services, justice) and corporate services. In his spare time David’s focus is on his family, keeping fit (ex long distance runner, now walker) and learning a new language.

David is passionate about helping to make a difference for people living with MND/ALS. For 18 years, he has volunteered his time and skills to the governance of two MND organisations in Australia, supported research, hosted and attended many events supporting MND/ALS, and participated at eight International Alliance meetings. David has been a Director of MND Australia since 2006 and was elected National President in November 2013. He has continued as a Director of MND Victoria since 2000 and was its State President from 2006 to 2013.

MND Australia

Calaneet Balas

Calaneet BalasCalaneet Balas became CEO and President of The ALS Association in December 2017. She joined the organization in June 2016 as the Executive Vice President of Strategy, leading all three mission areas, including global research, public policy and care services, which work in an integrated fashion to find a cure, advance treatments and enhance the quality of life for people living with ALS.

Calaneet joined the Board of Directors of the International Alliance of ALS/MND Associations in December 2017. Most recently Calaneet was elected Chairwoman in December 2018.

The ALS Association

Marcela Santos

Marcela Santos

Marcela is a Psychologist with Masters in Social Inclusion of People with Disabilities. Her dad lived with ALS for 16 years, and she was one of his primary caregivers. Her dad had a very positive outlook on ALS and the way he embraced it was passed to his daughter. Her father, Alfredo Santos recently passed away on February 8th 2020. She has dedicated all her academic and professional life to the care of people with disabilities in Colombia in public and private entities and NGOs. She has been a volunteer psychologist providing psychotherapy at no cost to PALS and their CALS in Colombia since 2014. Besides her academic history and professional experience, the personal experience with her dad, allows her to give a much more meaningful care to PALS & CALS.

ALS Association of Colombia (ACELA)

Mary-Ellen Bench

Mary-Ellen Bench

Mary Ellen is counsel at Dentons, and has over 30 years experience working in senior roles in municipalities where she developed a solid reputation as a strategic thinker focused on problem solving.  She has actively participated in many governance reviews and has sat on many not-for-profit boards based in Canada and the United States.  Mary Ellen has been designated as a certified inhouse counsel (CIC.C) by the Canadian Corporation Counsel Association and the Rotman School of Management, University of Toronto.

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About

  • Who we are
  • Board of Directors
  • Committees/Advisory Councils
    • Scientific Advisory Council
    • PALS and CALS Advisory Council
    • Innovation and Technology Council
    • Governance Committee
    • Budget and Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

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

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

  • Mark Miller

    Mark Miller

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Roy

    Roy
    roy

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Cath Muir

    Cath Muir
    Cath

  • Ali Var, Turkey

    Ali Var, Turkey

  • Peng Yi-Wen

    Peng Yi-Wen

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • 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

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

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

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Willi Klein

    Willi Klein

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

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

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Art Eggert, USA

    Art Eggert, USA

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Fabio Carvalho

    Fabio Carvalho

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Ann Nicol

    Ann Nicol

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

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