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International Alliance of ALS/MND Associations

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      • AB Science – Masitinib
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      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
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      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
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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

  • Art Eggert, USA

    Art Eggert, USA

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Tison, USA

    Tison, USA

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

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

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

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Andrietta

    Andrietta

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Liam Dwyer, England

    Liam Dwyer, England

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • IMG_1211

    IMG_1211

  • Liam Dwyer, England

    Liam Dwyer, England

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Mauril Belanger

    Mauril Belanger

  • Chen Chun-Chin

    Chen Chun-Chin

  • Jean

    Jean
    jean

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Bayley, Australia

    Bayley, Australia

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Wilfried Leusing

    Wilfried Leusing

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Michael Lee, Australia

    Michael Lee, Australia

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

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

  • JP

    JP

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

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

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Fabio Correia

    Fabio Correia

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • IMG_2658

    IMG_2658

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

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