An official website of the United States government
Announcement: ALS Awareness Month — May 2017
Weekly / April 28, 2017 / 66(16);428
May is ALS Awareness Month, observed to raise awareness of and foster research for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a progressive, fatal, neurodegenerative disorder of upper and lower motor neurons. The cause of ALS is not known, and no cure exists.
In October 2010, the Agency for Toxic Substances and Disease Registry (ATSDR) launched the congressionally mandated National ALS Registry (https://wwwn.cdc.gov/als/) to collect and analyze data regarding persons in the United States with ALS. The goals of the registry are to determine the incidence and prevalence of ALS, characterize the demographics of persons living with ALS, and examine possible risk factors for the disease.
In August 2016, ATSDR released its second prevalence report, which indicated an estimated 16,000 persons (5.0 per 100,000 population) were living with ALS in 2013. ALS remains more common among whites, males, non-Hispanics, and persons aged 60–69 years. The registry uses data from existing national databases, as well as the registry’s online system to track ALS cases. Online registrants can also take surveys regarding potential risk factors for the disease.
A new National ALS Biorepository allows researchers to request high-quality biologic specimens to study ALS. Both in-home and postmortem specimens are being collected from interested patients enrolled in the National ALS Registry. Epidemiologic data from patient surveys will be matched with patient specimens, making the biorepository a rich data source for ALS research.
ATSDR is collaborating with the ALS Association (https://www.alsa.org), the Muscular Dystrophy Association (https://www.mda.org), the Les Turner ALS foundation (http://www.lesturnerals.org), and other organizations to spread awareness about the National ALS Registry. Additional information is available at https://www.cdc.gov/als.
Suggested citation for this article: Announcement: ALS Awareness Month — May 2017. MMWR Morb Mortal Wkly Rep 2017;66:428. DOI: http://dx.doi.org/10.15585/mmwr.mm6616a6.
MMWR and Morbidity and Mortality Weekly Report are service marks of the U.S. Department of Health and Human Services.
Use of trade names and commercial sources is for identification only and does not imply endorsement by the U.S. Department of
Health and Human Services.
References to non-CDC sites on the Internet are
provided as a service to MMWR readers and do not constitute or imply
endorsement of these organizations or their programs by CDC or the U.S.
Department of Health and Human Services. CDC is not responsible for the content
of pages found at these sites. URL addresses listed in MMWR were current as of
the date of publication.
All HTML versions of MMWR articles are generated from final proofs through an automated process. This conversion might result in character translation or format errors in the HTML version. Users are referred to the electronic PDF version (https://www.cdc.gov/mmwr) and/or the original MMWR paper copy for printable versions of official text, figures, and tables.
Questions or messages regarding errors in formatting should be addressed to [email protected].