‘Light the Night’ campaign returns to mark Amyloidosis Awareness Month
Buildings and landmarks across US, and in Canada and UK, turning red in March
Throughout March — Amyloidosis Awareness Month — the Amyloidosis Foundation is inviting the public to join its “Light the Night for Amyloidosis” campaign, increasing awareness about a group of rare diseases that includes familial amyloid polyneuropathy (FAP).
People are asked to brighten the entrance or features of their home in red, the initiative’s official color. Red light bulbs are available for purchase at the foundation’s online shop.
“In honor of [the] ‘Amyloidosis Awareness Month’ in March, we’re encouraging everyone to light up their porch or entryway with red bulbs throughout the month,” the foundation states on its “Light the Night” campaign webpage.
Participation also is being asked of public landmarks and other buildings or structures.
Greater awareness of rare diseases like FAP could help in earlier diagnoses
Amyloidosis occurs when abnormal proteins misfold to form toxic clumps called amyloid deposits. These deposits accumulate in tissues, affecting their function.
A hereditary form of amyloidosis, FAP results from mutations in the TTR gene that cause the transthyretin protein to become unstable and misfold. In patients, toxic transthyretin clumps mostly are found in peripheral nerves, those outside the brain and spinal cord that cause numbness and tingling in the feet and hands, and in other tissues.
Some FAP symptoms mimic those of more common conditions, and the disease can be challenging to diagnose — an essential step for an early start on disease treatments and potentially better outcomes. Raising awareness about how amyloidosis manifests in all its forms can be of help.
As with previous awareness months, the foundation also is asking public landmarks and private companies to join its “Light the Night” campaign. It reports that March is opening with more than a dozen buildings or structures in the U.S. — and a few in Canada and the U.K. — showing red for one or more days.
In the U.S., participating structures include the Union Plaza Building in Little Rock, Arkansas; the State Capitol Building in Baton Rouge, Louisiana; the TD Garden in Boston; the State Capitol Building Cupola in Nashville; the Columbia Center in Seattle; and the Mid-Hudson Bridge in New York.
The North Amercian headquarters for AstraZeneca in Wilmington, Delaware, also is decked in red until March 17. AstraZeneca markets Wainua (eplontersen), an approved FAP therapy, together with Ionis Pharmaceuticals in the U.S. and by itself elsewhere.
In Canada, the Bridge, Belleville sign, and Fire Station Gardens in Belleville, Ontario, and the City Hall in Victoria, British Columbia, will sport red. In Bradford, England, the City Hall Clock Tower and the City Park Mirror Pool will do the same.
A list of participants is being updated regularly.
Also, the 3rd Annual Bradley Z. Naifeh Amyloidosis Conference will take place at Houston Methodist Hospital and virtually on March 21 for patients and caregivers, with a conference for medical professionals the following day. This event brings together experts to raise awareness and educate people about amyloidosis.
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