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International Alliance of ALS/MND Associations

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      • NeuroSense – PrimeC
      • Neuvivo – NP001
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      • Nuedexta
      • Radicava/Edaravone
      • Riluzole/Tiglutik
      • Rozebalamin/Methylcobalamin
      • Tofersen/Qalsody
    • Drugs No Longer in Development
      • Amylyx – AMX0035
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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? – MND Association
What is ALS? – Les Turner Foundation
What is ALS? – ALS Canada
What is ALS? – The ALS Association
What is ALS? – ALS Quebec
Glossary of Terms – Roon

Français

À propos de la SLA – ALS Canada
Qu’est-ce que la SLA? – SLA Québec

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.

Nederlands

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

Íslenskur

Hvað er MND? – MND Á Ïslandi

Primary Sidebar

  • Daniel Hare

    Daniel Hare

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Ali Var, Turkey

    Ali Var, Turkey

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Mark Miller

    Mark Miller

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

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

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

  • David Bishop

    David Bishop

  • Art Eggert, USA

    Art Eggert, USA

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Christian Bär, Germany

    Christian Bär, Germany

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

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

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

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Jean

    Jean
    jean

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

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

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Tison, USA

    Tison, USA

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Fabio Carvalho

    Fabio Carvalho

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

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

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Paul Launer, USA

    Paul Launer, USA

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

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

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

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

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

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

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

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