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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

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

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

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

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

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

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

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

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

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

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Hollister

    Hollister
    hollister

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Jon Newsome, USA

    Jon Newsome, USA

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

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

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

  • Shay Rishoni

    Shay Rishoni

  • Ali Var, Turkey

    Ali Var, Turkey

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

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

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

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Fabio Correia

    Fabio Correia

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

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

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

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Dad

    Dad

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Liam Dwyer, England

    Liam Dwyer, England

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Michael Lee, Australia

    Michael Lee, Australia

  • Steve

    Steve

  • Andrietta

    Andrietta

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

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