ABOUT ALS/MND
Amyotrophic Lateral Sclerosis (ALS), or Motor Neuron Disease (MND) is a currently incurable, progressive, fatal neuro-degenerative disease that affects nerve cells in the brain and spinal cord. The disease leads to weakening and eventual paralysis of muscles. Mean survival time with ALS is 2-5 years, but about 10% of people living with ALS live 10 years or longer.
​
ALS/MND is considered to be rare, with an incidence rate (number of new cases per year) of 2 per 100,000. About one in 350 people will be diagnosed with ALS/MND in their lifetime. The disease can attack anyone, but risk increases with age, and most who develop ALS/MND are between 55-75 years of age. Males are somewhat more likely to be diagnosed than females, and military veterans are twice as likely to be diagnosed than non-veterans.
​
Most (90-95%) cases of ALS/MND have no known cause (this is termed “sporadic” ALS). About 5-10% of cases are linked to a genetic mutation and are known as familial ALS.
​
ALS/MND is a highly variable disease. It can begin with lower limb weakness, or upper limb onset, or can first manifest itself in the throat, affecting speech and swallowing (bulbar-onset). Wherever it first presents itself, the disease eventually spreads to other areas of the body. The rate of progression of ALS/MND is also highly variable, with some patients passing away within a year while others live with the disease twenty or more years. Researchers suspect that sporadic ALS/MND can be triggered by a combination of as many as five environmental and genetic factors, and that they may not always be the same combination in different patients. The high degree of heterogeneity in ALS/MND is a complicating factor for clinical research seeking to find a therapy to slow or stop the disease.
​
For more detailed information about the disease, its symptoms, diagnosis, clinical trials, care services, support groups, and current research we recommend the following sites:
​
Motor Neuron Disease Association
National Institute of Neurological Disorders and Stroke (NINDS)
ALS Therapy Development Institute