Supporters Set to ‘Light the Night’ for Amyloidosis Awareness Month

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by Mary Chapman |

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To mark Amyloidosis Awareness Month, observed each March, the Amyloidosis Foundation is reprising its “Light the Night for Amyloidosis” campaign.

The month-long initiative is aimed at heightening awareness about amyloidosis, a group of rare disorders that also includes familial amyloid polyneuropathy (FAP), a progressive disease caused by the buildup of amyloid fibrils consisting of a protein called transthyretin.

The hallmark symptoms of FAP, a disease that is thought to affect 1 in 100,000 U.S. residents, include those associated with peripheral neuropathy, which commonly manifests as abnormal sensations in the hands and feet.

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In addition to the general public, Amyloidosis Awareness Month targets legislators, scientists, health professionals, and pharmaceutical industry representatives. The goal is to raise the visibility of amyloidosis, as well as the community’s needs.

With its “Light the Night” effort, the foundation is doing its part. “ ‘Light the Night for Amyloidosis’ is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment, and hopefully a cure!” the organization states on a webpage announcing the effort.

To participate, supporters are asked to illuminate their home’s porch or entryway with a red bulb through March. Red light bulbs may be purchased here, along with foundation merchandise.

As part of the campaign, the organization has also sought to get landmarks and businesses involved globally. Last year, more than 100 sites in five countries were awash in red.

So far this year, more than 80 such structures are set to be lit in red, some for a day or so, including Ford Field in Detroit, Michigan; the Georgia World Congress Center Authority in Atlanta; the State Capitol Building in Baton Rouge, Louisiana; the City Hall Dome in Baltimore, Maryland; Gotham Hall in New York; The Cloud in Auckland, New Zealand; the Adelaide Oval in North Adelaide, Australia; and the NASCAR Hall of Fame in Charlotte, North Carolina.

Supporters are encouraged to follow the “Light the Night” campaign on Twitter.

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Why Rare Disease Day Matters to the Amyloidosis Community

In Alabama, the state has declared the month of March as Amyloidosis Awareness Month to help draw attention to amyloidosis and disorders like FAP.

Also to mark the month, the Amyloidosis Research Consortium is calling attention to a virtual continuing education course to be presented on March 12 by the Washington University School of Medicine in St. Louis. Titled “Amyloidosis: Hidden in Plain Sight — Update on Best Practices for Early Detection and Treatment,” the course will cover the latest in amyloidosis news, including barriers to treatment and the use of artificial intelligence for earlier diagnoses.