Every 90 minutes, someone is diagnosed with ALS in the US
ALS attacks nerve cells called motor neurons in the brain and spinal cord, leading to weakness and eventual paralysis of all voluntary muscles, including those used for breathing and swallowing
Currently, there is no cure or effective treatment
An estimated 30,000 people in the US have ALS at any given time
It can take a year or longer to diagnose ALS
Death often occurs within five years of an ALS diagnosis
Most cases of ALS are sporadic, occurring in families without a history of the disease
ALS shows no prejudice and affects people of all ages
Military veterans, regardless of branch of service, are twice as likely to die from ALS as members of the general public
Caring for a person with advanced ALS can cost more than $250,000 annually
Years ago, it was widely believed that there might be one cause to explain all cases of ALS. Today, doctors and scientists know that can’t be the case. Together, they’re working to identify the multiple causes of the disorder.
The initial signs of ALS vary from patient to patient. In “limb onset” ALS, people experience weakness in a specific muscle group, such as in the leg or the front part of the foot resulting in difficulty walking, referred to as “foot drop.” This initial muscle weakness will, with varying progression, typically spread to other parts of the body. When symptoms begin in the chest, neck and mouth area, it is often referred to as “bulbar onset” ALS.
The following possible causes of the disease are being studied by ALS specialists: genetic factors, protein misfolding, toxic buildup of free radicals, excess levels of a common chemical in the nervous system called glutamate, defects in mitochondria (the energy-producing parts of the cell), apoptosis (programmed cell death), immune system abnormalities, viruses and other infectious agents, and toxins.
The most promising strategies under investigation for treatment of ALS are aimed at: combating misfolded proteins, modulation of the immune system, protection of nerve cells, improving mitochondrial function, improving muscle function, supporting respiratory function, and antisense technology to stop production of mutant protein.
Although ALS research is proceeding at an unprecedented pace, only one medication has been found to be somewhat effective against the disease and is approved by the US Food and Drug Administration (FDA) as an ALS treatment. That medication, riluzole, has a modest effect on prolonging survival, which has usually been described as a three-month life extension.