ALS Awareness 2015

May is ALS Awareness Month. Far too little is known about ALS (Lou Gehrig’s disease). Learn more about how the National ALS Registry is changing that

Who can forget the 2014 ALS Ice Bucket Challenge? In response to the challenge, participants dumped buckets of ice cold water on their heads and posted the videos on the internet. Then they, in turn, issued the challenge to others. The purpose of the challenge was to raise money for ALS. And it was successful. Since July 29, 2014, the ALS Association and other ALS organizations have received over $100 million in donations from that initiative.

Not since Lou Gehrig made his famous “Luckiest Man on Earth” speech in 1939 has so much public attention been focused on ALS. That was the year that the beloved New York Yankees baseball player was diagnosed with ALS. Since then ALS has also been known as “Lou Gehrig’s disease.”

ALS, a progressive neuromuscular disease, usually leads to death within 2–5 years of diagnosis. Seventy six years have passed since Lou Gehrig was diagnosed and still no one knows what causes ALS—and there is still no cure.

In 2009, the federal Agency for Toxic Substances and Disease Registry (ATSDR), as mandated by Congress, started the National ALS Registry to collect and analyze data on persons with ALS in the U.S.

The goal of the Registry is to learn more about who gets ALS and to understand the possible causes of the disease. The Registry uses two methods to help identify all cases of ALS in the country.

Staff use existing national databases like Medicare and the Veterans Health Administration (VHA). They also use the secure web portal launched in October 2010 to identify cases that are not included in those databases.

Persons with ALS who have registered on the web portal may complete brief surveys that can help researchers understand possible risk factors for the disease, such as genetics and environmental and occupational exposures.

The ALS Registry is the only effort to identify ALS cases nationwide among people living with the disease in the U.S. The first report to summarize data from the National ALS Registry was released in July 2014. The report provides information on how many people were living with ALS in the U.S. from October 19, 2010 – December 31, 2011.

• 12,187 people were living with ALS during this time period, or 4 in 100,000 persons.
• ALS was more common among Whites, males, non-Hispanics, and those in the 60–69 age range.
• Males had a higher rate of ALS than females across all sources.

Learn more about the ALS Registry report, and be sure to read the ALS Awareness Month feature.

You can also find more information about the National ALS Registry on the web site or by calling toll-free at 1-877-442-9719. You can also learn more about the Registry through the local chapter of an ALS advocacy or support group, such as the ALS Association, the Muscular Dystrophy Association, and the Les Turner ALS Foundation.