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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.

Subscribe

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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.

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

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    IMG_1211

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
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  • 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

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • 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

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Jeff Sutherland

    Jeff Sutherland
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  • Ali Var, Turkey

    Ali Var, Turkey

  • 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

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

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

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

  • Hollister

    Hollister
    hollister

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Wilfried Leusing

    Wilfried Leusing

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

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

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Claire Garry, USA

    Claire Garry, USA
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    393647_2252248542053_984912751_n

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Roy

    Roy
    roy

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Paul Launer, USA

    Paul Launer, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Robbie Caliste, UK

    Robbie Caliste, UK

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

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

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
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  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Ali Var, Turkey

    Ali Var, Turkey

  • Mauril Belanger

    Mauril Belanger

  • Liam Dwyer, England

    Liam Dwyer, England

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

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