ALS Awareness Month

May is ALS Awareness Month in the United States, which is a campaign to increase awareness and raise money to fund research in order to find a cure for amyotrophic lateral sclerosis (ALS). The campaign is officially recognized by the Centers for Disease Control and Prevention (CDC). The individual states that have recognized the month of May as ALS Awareness Month include Georgia, Massachusetts, Minnesota, North Dakota, and Ohio.

What is ALS?

ALS is a group of neurological diseases that involve the nerve cells (neurons), which are responsible for controlling voluntary muscle movements such as chewing, talking, and walking. The disease is progressive, that is, the symptoms get worse over a period of time. Early symptoms of ALS normally include weakness or stiffness of the muscles. Gradually all muscles under voluntary control are affected, and patients lose their strength and the ability to speak, eat, or even move, or even breathe. Most people with ALS usually die from respiratory failure within 3 to 5 years from the time when the symptoms first begin to appear. However, about 10 percent of ALS-affected individuals survive another 10 years or more.

An estimated 14,000–15,000 Americans have ALS, according to the 2016 estimate by the CDC. The potential risk factors for ALS include:

  • Age: Although the disease can strike at any age, symptoms usually appear between the ages of 55 and 75;
  • Gender: Women are slightly less likely to develop ALS. However, as they age, the ratio between men and women reduces;
  • Race and ethnicity: Caucasians and non-Hispanics are most likely to develop ALS disease.

According to some studies, military veterans are about 1.5 to 2 times more likely to develop ALS. Although the reason for this is not entirely clear, the potential risk factors for veterans may include exposure to lead, pesticides, and other environmental toxins. The U.S. Department of Veterans Affairs (VA) has recognized ALS as a military service-connected disease.

The majority of ALS cases (over 90 percent) are regarded as sporadic, which indicates that the disease seems to occur at random with no clearly linked risk factors, and without any family history of ALS. Only one parent is required to carry the gene that causes the disease in the familial forms of ALS.

During May, the ALS Association sponsors the National ALS Advocacy Day, as well as a Public Policy Conference, and leads a delegation of people suffering from ALS, their caregivers, and other ALS advocacy groups to Capitol Hill in Washington DC, to persuade Congressmen to support initiatives to develop treatments as well as a cure for ALS. The ALS Association has also produced a commemorative US postage stamp in 2008 to promote the ALS Awareness Month through the online marketplace Zazzle.