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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.

Primary Sidebar

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Andrietta

    Andrietta

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • JP

    JP

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • 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

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Daniel Hare

    Daniel Hare

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Peng Yi-Wen

    Peng Yi-Wen

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

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

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

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

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

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

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

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

  • Ali Var, Turkey

    Ali Var, Turkey

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

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

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

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

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

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

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

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