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International Alliance of ALS/MND Associations

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What is ALS/MND?

Motor Neurone Disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) that control muscles undergo degeneration and die. Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP) and Primary Lateral Sclerosis (PLS) are all subtypes of motor neurone disease.

MND is the widely used generic term in the United Kingdom, Australia and parts of Europe, and ALS is used more generically in the United States, Canada and South America.

These diseases are also sometimes known as Maladie de Charcot and are often referred to in the United States as Lou Gehrig’s Disease, after the famous baseball player who died of the disease.

By any name, ALS/MND is characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe, and swallow. With no nerves to activate them, muscles gradually weaken and waste. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing, and breathing. Progress is generally rapid, with an average life expectancy of between 2 and 5 years from the onset of symptoms.

Though it can affect anyone, ALS/MND is more often found in the 40 to 70 year age group.

The impact on the community of ALS/MND is usually measured by the incidence and prevalence of the disease. Incidence is the number of new cases added in a defined period, usually a year. Prevalence is the number of cases existing at any point in time.  The incidence of ALS/MND is 2 per 100,000 of total population, while the prevalence is around 6 per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. A small proportion of cases (~10%) are familial (inherited) while the majority of cases (~90%) are still considered sporadic or singleton. However, research is continuing to further reveal genetic associations with ALS/MND. This will likely mean that many cases considered sporadic may also have a genetic contribution. Further research is needed to truly establish the extent of the genetic contribution to causing and/or moderating ALS/MND. The Alliance believes that all people diagnosed with ALS/MND should have genetic counselling and testing if they chose to.

Although classified as a rare disease based on its prevalence, ALS/MND in fact quite common. There are approximately 140,000 new cases diagnosed worldwide each year.  That is 384 new cases every day!

The disease affects each individual differently and can have a devastating impact on family, carers, and friends. The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability, which in turn require increased levels of support.

More information can be found in various languages at the following resources

English

Facts About MND – MND New Zealand
What is Motor Neurone Disease? – MND Australia
What is MND? – MNDA
What is ALS? – Les Turner Foundation
What is ALS? – ALS Canada
What is ALS? – ALSA

Français

À propos de la SLA – ALS Canada

Deutsche

Amyotrophe Lateralsklerose (ALS) – DGM
Was ist ALS? – ALS Schweiz

中國人

认识ALS – ORACC

Español

¿QUÉ ES LA ELA? – Asociación ELA Argentina

¿QUÉ ES LA ELA? – Apoyo Integral Gila A. C.

Dutch

Wat is ALS – ALS Stichting ALS Nederland
Wat is ALS – ALS Liga Belgium

Íslenskur

Hvað er MND? – MND Á Ïslandi

Primary Sidebar

  • 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

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

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

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Elkin Ramiro Gaviria Muñoz, Diagnosed  December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Peng Yi-Wen

    Peng Yi-Wen

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

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

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Ann Nicol

    Ann Nicol

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Fabio Carvalho

    Fabio Carvalho

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Christian Bär, Germany

    Christian Bär, Germany

  • Fabio Correia

    Fabio Correia

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Mark Miller

    Mark Miller

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

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

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

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

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

  • David Bishop

    David Bishop

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

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