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International Alliance of ALS/MND Associations

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Voice Preservation

Making Our Voices Heard

Speech is a key part of a person’s identity. Voice matters to personal identity and expression, and connection with family and friends. The majority of people living with ALS/MND are eventually robbed of this fundamental part of their humanity.

This can be overcome using voice preservation technologies, but our research shows this is not equitably accessible. The Alliance seeks to provide universal access to technology to improve the quality of life of people living with ALS/MND. The ideal for every individual living with ALS/MND worldwide is to have the right to access voice preservation upon diagnosis.

The Voice Preservation Project

The Alliance, through a collaboration between Hospital Universitario Nacional de Colombia (HUN) and the Asociación Colombiana de ELA (ACELA), has launched a pilot project to deliver voice preservation technology to people living with ALS/MND in Colombia. This will serve as the basis on which future plans will be made on how best to scale to reach more people around the world.

If you would like to join us in expanding our reach to more people, please donate. We deeply appreciate your support.

Watch this video to find out more from the Alliance and its Information Technology Advisory Council (ITAC).

https://www.als-mnd.org/wp-content/uploads/2023/06/Voice-Preservation-ITAC-Intro.mp4

Watch this video to hear from Orlando Ruiz, founder of ACELA and a person living with ALS/MND, as he emphasizes the devastation of losing your voice. He goes on to explain the potential of voice banking technology to preserve dignity, autonomy and identity, and ensure no one loses their voice to ALS/MND.

 

Keep Up To Date

This project is in development and more details and information are coming soon! If you are interested in learning more, sign up to get periodic updates as the work progresses.

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Disclaimer: Voice preservation is not designed, intended or made available for diagnosis, treatment or prevention of diseases or for use as a medical device. It is also not designed or intended to replace or be a substitute for professional medical advice, diagnosis, treatment or judgment.

Primary Sidebar

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

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

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

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

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Peng Yi-Wen

    Peng Yi-Wen

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Bayley, Australia

    Bayley, Australia

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Shay Rishoni

    Shay Rishoni

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Jean

    Jean
    jean

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

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

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

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Dr Shelly Hoover

    Dr Shelly Hoover

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Liam Dwyer, England

    Liam Dwyer, England

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

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

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

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • 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

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Tison, USA

    Tison, USA

  • IMG_1211

    IMG_1211

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