Most frequent questions and answers

Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease, first identified in 1869 by the noted French neurologist Jean-Martin Charcot.

No one knows what causes most cases of ALS.

The number worldwide is estimated at around 450,000.

LS is slightly more common in men than women, but recent studies suggest that this difference is decreasing over time.

ALS is age related; most people with ALS find out they have it when they are between 55 and 75 years of age.

Most people live from 3 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.

There are two broad categories of ALS – sporadic (sALS, essentially of unknown cause) and familial (fALS, with a direct genetic linkage). Familial ALS cases are typically identified by examining family medical history and with genetic testing. Several specific genes have been linked to the inherited form of the disease, estimated to be between 5- 10% of all cases.

The initial signs of the disease vary from patient to patient, and can begin with very small or gradual changes. Many patients experience weakness in a specific muscle group, such as the leg or front part of the foot, also known as limb onset. This initial muscle weakness will spread to other parts of the body with varying rates of progression between patients. Symptoms beginning in the chest or neck and mouth area are referred to as bulbar onset.

Currently, there is no effective therapeutic approved for use by the FDA that has been identified to stop the disease’s progression or prevent onset. Rilutek is a drug that has been approved for use in the treatment of ALS; however it offers a very modest effect which has usually been described as a three-month life extension.