Supporters to ‘Light the Night’ this month for amyloidosis awareness
Red lights across US, in other countries, aim to help speed disease diagnosis
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Homes and landmarks across the U.S. and other countries will once again light up in red throughout March for Amyloidosis Awareness Month as the Amyloidosis Foundation reprises its annual “Light the Night for Amyloidosis” campaign.
As in previous years, campaign supporters are encouraged to install a red bulb, the initiative’s official color, on their porch or entryway, to help raise awareness of a rare group of diseases that includes transthyretin amyloid cardiomyopathy (ATTR-CM) and hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN). Red light bulbs can be purchased at the foundation’s online shop or in participants’ local communities.
Community members are also invited to request that local landmarks and other buildings be lit up in red and to share photos of the displays on social media to help expand the campaign’s reach.
“We invite supporters everywhere to participate — whether that means illuminating your porch light, asking a local building or bridge to light up, or sharing photos on social media to spread the word,” the foundation states on its campaign webpage. “Every light symbolizes hope and helps amplify the message that awareness saves lives.”
Amyloidosis comprises a group of diseases marked by the accumulation of toxic protein clumps, called amyloid fibrils, in the body’s tissues, leading to organ damage. ATTR-CM and hATTR-PN are two forms caused by toxic clumps of the transthyretin protein.
In people with ATTR-CM, transthyretin aggregates build up mainly in the heart, causing damage that ultimately leads to symptoms of heart failure, such as shortness of breath, fatigue, and abnormal heart rate.
A hereditary form, hATTR-PN, also known as familial amyloid polyneuropathy, occurs when transthyretin clumps accumulate and damage mainly peripheral nerves, those found outside the brain and the spinal cord. Abnormal sensations in the hands and feet, such as tingling and numbness, are common symptoms.
Awareness month goal: Shorten the path to testing, treatment
Because ATTR-CM and hATTR-PN symptoms often mimic those of more common conditions, both forms can be challenging to diagnose. Early diagnosis, however, is critical for the prompt initiation of disease-modifying therapies and potentially slowing disease progression. Increasing public awareness about how amyloidosis presents may help shorten the path to testing and treatment, advocates say.
According to the foundation, “Light the Night for Amyloidosis” is a simple but powerful way to spark conversation, encourage earlier recognition and diagnosis, improve care, and show solidarity with patients, caregivers, families, and clinicians in the amyloidosis community.
To make participation easier, the foundation provides a “Light the Night for Amyloidosis” outreach toolkit. The free downloadable file includes ready-to-use social media post ideas to help promote the event, template letters and emails to request landmark participation, guidance on identifying local lighting locations, and suggestions for community engagement and storytelling.
The foundation is also again inviting public landmarks and private entities to join the campaign.
This March, more than 20 locations across the U.S. — along with a few in Canada, Ireland, and the U.K. — are set to shine red for one or more days in recognition of Amyloidosis Awareness Month.
In the U.S., this year’s participating landmarks include the Peace Bridge in Buffalo, New York; the Mid-Hudson Bridge in New York City; the Pennsylvania Capitol Building in Harrisburg; One Liberty Place in Philadelphia; the Athens County Courthouse, in Ohio; the State Capitol Building Cupola in Nashville, Tennessee; and the Bank of America Plaza in Dallas.
Landmarks in Canada, Ireland, the UK to light up red
In Canada, City Hall in Port Coquitlam in British Columbia and the 3D Toronto Sign in Ontario lit up in red yesterday. In Ireland, the Kilkenny Castle is participating. In Bradford, England, the City Hall Clock Tower will shine red today, while in Newry in Northern Ireland, both the Town Hall and the Down Leisure Centre lit up in red yesterday.
A full list of participants is available on the foundation’s website and is being updated regularly as more locations join the initiative.
“Together, we can brighten the path toward earlier recognition, improved care, and greater support for everyone affected by amyloidosis,” the foundation stated on the initiative’s webpage.
