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.
Although MND is the widely used generic term in the United Kingdom, Australia and parts of Europe, 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. Only 10% of cases are familial (inherited) with the remaining 90% sporadic.
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.
Global Day
Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.
ALS/MND is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.
Alliance members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.
Why 21 June?
June 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.
Join the fight… Spread the word
Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.
Ways to spread the word:
