This figure is from the journal article “Modelling amyotrophic lateral sclerosis: progress and possibilities” and shows ten proposed disease mechanisms for ALS. Source: http://dmm.biologists.org/content/10/5/537

Did you know that today is the Global ALS Awareness Day? Celebrated every year on June 21st, by the International Alliance of ALS/MND Associations. A day of recognition of ALS/MND – a disease that affects people in every country around the globe.

Amyotrophic lateral sclerosis - ALS for short - is a vile disease. It results in the progressive loss of motor neurons that control voluntary muscles. Also known as motor neuron disease (MND) and Lou Gehrig’s Disease. Descriptions of it date back to at least 1824, by the Scottish physician Charles Bell. In 1850, the French neurologist François-Amilcar Aran was the first to describe a disorder he named “progressive muscular atrophy”, a form of ALS in which only the lower motor neurons are affected. In 1869, the French neurologist Jean-Martin Charcot described the connection between the symptoms and the underlying neurological problems, and five years later introduced the term amyotrophic lateral sclerosis.

Despite a number of genetic and environmental studies, the cause of ALS remains unknown. There are of course drugs to alleviate the symptoms. For example Riluzole which in 1995 became the first FDA-approved drug for ALS. Another drug, Edaravone, was approved in Japan and South Korea in 2015 and in the United States in 2017. Nevertheless, ALS is still considered a disease to which there is no cure, yet.

It is actually such a vile, relentless disease that it envokes a natural repulsion to even write about it. Having seen what it does to a human being affected by it, leaves you almost as speechless as the victims are in the end. This is how one loved one describes ALS: “It starts, usually, with the extremities, rendering them useless, until it short-circuits every last neuron in the body. The mind persists, but the body, at the end stages, becomes completely paralysed”.

Yet we must believe that one day there will be a cure. Or rather, we know there will be one. The only question is: when?

There are of course numerous organizations in countries all around the world to first of all find the cure, and also solve the medical and social problems associated with ALS, to help the patients, and to share experiences. One of these organizations is Iam ALS at iamals.org, with the statement on its front page: ALS is Relentless. So Are We.

As saddening as this disease is - with cure perhaps a long away in the future - with each and every individual suffering from it, it too is a journey of life. Worth reckoning in the lives of these individuals, and many more:

1888-0120 Lead Belly* (b Huddie Ledbetter) folk and blues singer/guitarist – Mooringsport, LA USA (1949/61)
1893-1226 Mao Zedong* revolutionary/political leader – Shaoshan, Hunan, Qing Empire (1976/82)

1903-0619 Lou Gehrig* baseball player – Manhattan, NY USA (1941/37)
1906-0925 Dmitri Shostakovich* pianist/composer – St. Petersburg, Russia (1975/68)
1908-0818 Sam English* Northern Irish football player – Crevolea, Ireland (1967/58)

1910-0301 David Niven* actor – Belgravia, London, England (1983/73)
1910-1126 Cyril Cusack* Irish actor – Durban, Natal, South Africa (1993/82)
1916-0521 Dennis Day* singer/ entertainer/of Irish descent – The Bronx, NY USA (1988/72)

1921-0207 Katharine Balfour* actress/ radio talk show host/writer – New York, NY USA (1990/69)
1922-0422 Charles Mingus* jazz musician/ bandleader/composer – Nogales, AZ USA (1979/56)
1922-0717 Sid Collins* (b Cahn) broadcaster (the Indianapolis 500-Mile Race) – Indianapolis, IN USA (1977/54)
1924-0629 Roy Walford* physician/ advocate of calorie restriction for life extension – San Diego, CA USA (2004/79)
1924-1014 Robert Webber* actor – Santa Ana, CA USA (1989/64)
1924-1113 Motoo Kimura* 木村 資生 biologist/ population geneticist – Okazaki, Japan (1994/70)
1927-0104 John Drury* television news anchor – Peoria, IL USA (2007/80)

1930-0501 Maj Fant* (b Lindberg) social worker/journalist/author – Malmö, Sweden (1995/65)
1931-0413 Jon Stone* children’s television writer (Sesame Street)/director/producer – New Haven, CT USA (1997/65)
1931-0707 Kerstin Abram-Nilsson* artist/ debater/social activist – Stockholm, Sweden (1998/67)
1932-0212 Axel Jensen* author – Trondheim, Norway (2003/71)
1936-0429 Lane Smith* actor – Memphis, TN USA (2005/69)

1941-0122 Jaan Kaplinski* poet/ philosopher/politician – Tartu, Estonia, Soviet Union (2021/80)
1942-0108 Stephen Hawking* theoretical physicist/ cosmologist – Oxford, England (2018/76)
1942-0506 Richard Beeman* historian/ biographer – Seattle, WA USA (2016/74)
1942-0529 Håkan Sundin* bandy player – Falun, Sweden (1996/54)
1943-1105 Sam Shepard* actor/ playwright/director – Fort Sheridan, IL USA (2017/73)
1944-1126 Roberto Fontanarrosa* cartoonist/ comics artist/writer – Rosario, Santa Fe, Argentina (2007/62)
1946-0929 Neil Cherry* environmental scientist – Christchurch, New Zealand (2003/56)
1949-0415 Matti Savolainen* literary researcher – Savitaipale, Finland (2012/63)
1949-0907 Jukka Toivola* long-distance runner/chemistry teacher – Liperi, Finland (2011/61)

1950-0615 Dale Baer* character animator – Denver, CO USA (2021/70)
1950-0903 Pave Maijanen* singer/ musician/producer – Lappeenranta, Finland (2021/70)
1951-0417 Börje Salming* hockey player (NHL 100)/entrepreneur – Kiruna, Sweden (2022/71)
1951-1007 Barbara Brenner* health activist – Baltimore, MD USA (2013/61)
1953-0402 Ulla-Carin Lindquist* journalist/ television news anchor – Kristinehamn, Sweden (2004/50)
1955-0529 Mike Porcaro* bass player (Toto) – South Windsor, CT USA (2015/59)
1955-0615 Mauril Bélanger* politician – Mattawa, ON Canada (2016/61)
1957-1127 Edda Heiðrún Backman* actress/ singer/director – Akranes, Iceland (2016/58)
1958-0530 Antero Laukkanen* priest/ entrepreneur/politician – Kouvola, Finland
1958-0710 Donna Britt* Baton Rouge news anchor – Fort Worth, TX USA (2021/62) WAFB
1958-1115 Diane Pretty* euthanasia activist – Luton, England (2002/43)

1961-0821 Stephen Hillenburg* marine biologist/creator of SpongeBob Squarepants – Lawton, OK USA (2018/57)
1963-0217 Jenifer Estess* theater producer/founder of Project ALS – Moline, IL USA (2003/40)
1967-0318 Stefan Lindqvist* football player – Halmstad, Sweden (2020/52)
1969-0722 Jason Becker* virtuoso musician/songwriter/composer – Richmond, CA USA

1971-0108 Ben Byer* actor/ playwright/documentarist (Indestructible) – Cleveland, OH USA (2008/37)
1974-1125 Kenneth Mitchell* actor/ landscape architect – Toronto, ON Canada
1977-0319 Steve Gleason* Am.football player/awareness raiser (Gleason) – Spokane, WA USA
1978-0128 Papa Bouba Diop* football player – Dakar, Senegal (2020/42)

1983-0210 Patrick Quinn* ALS activist/co-founder of the Ice Bucket Challenge – Yonkers, NY USA (2020/37)

LINKS

ALS.org - Amyotrophic lateral sclerosis (Wiki) - I am ALS - International Alliance of ALS/MND Associations - List of people with motor neuron disease (Wiki) -

Updated 2.7.2023