This Amyloidosis Awareness Month, foundation aims to ‘Light the Night’

Advocates seek to put spotlight on rare disease's different types, like FAP

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by Mary Chapman |

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For this year’s Amyloidosis Awareness Month — observed each March to call attention to these protein disorders and the people they affect — the Amyloidosis Foundation is reprising its “Light the Night for Amyloidosis” campaign.

Across all 50 U.S. states, in Canada, and around the world, the goal is to have patients and their family members and friends, as well as other advocates, shine the rare disease’s signature color — red — to help raise awareness.

“We are asking everyone to light up their porch/entryway with red bulbs in March,” the foundation states on its campaign  webpage.

Amyloidosis is a group of conditions characterized by toxic protein clumps, called amyloid fibrils, that accumulate in the body’s tissues, leading to organ damage. One of its inherited forms is familial amyloid polyneuropathy (FAP), a progressive disease in which these toxic aggregates, made of the transthyretin protein, build up mostly in peripheral nerves, which exist outside the spinal cord and brain.

A hallmark of FAP, which is thought to affect 1 in every 100,000 U.S. residents, is peripheral nerve damage, a condition known as peripheral neuropathy. FAP symptoms can include tingling and numbness in the hands and feet or other abnormal sensations.

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My continued advocacy will lead to new amyloidosis treatment in N.Z.

Red is official color of Amyloidosis Awareness Month

Amyloidosis Awareness Month targets the general public, in addition to policymakers, scientists, healthcare professionals, and pharmaceutical industry representatives. The aim is to not only improve the visibility of amyloidosis, but to spotlight community needs.

For its part, the foundation is presenting its “Light the Night” effort, intended to spread awareness of amyloidosis — its diagnosis, treatment, and the need for a cure — and what it can mean to live with disorders such as FAP.

Campaign supporters again are asked to illuminate their home’s porch or vestibule throughout the month of March with a red bulb, representing the official color of Amyloidosis Awareness Month. In addition, the organization is encouraging businesses and landmarks globally to participate.

So far, more than 80 landmarks or notable structures will light up red, many for a day, others for multiple days.

As one example, the Prothena Biosciences building in South San Francisco will be illuminated the entire month. Prothena developed PRX004, a potential treatment for hereditary transthyretin amyloidosis, which includes FAP, that has been acquired by Novo Nordisk.

Other participating sites in the U.S. include the JL Tower in Anchorage, Alaska; Regions Field in Birmingham, Alabama; Ford Field in Detroit; the Wells Fargo Duke Energy Center in Charlotte, North Carolina; the Wrigley Building in Chicago; the Helix Garage in Lexington, Kentucky; and the IBM Ward Village in Honolulu.

In Canada, the Calgary Tower in Alberta and the CN Tower in Toronto will be lit up red. In Bradford, England, so too will be the City Hall Clock Tower.

Early diagnosis can lead to better outcomes for both patients and their families.

This month, the Houston Methodist J.C. Walker Jr. Transplant Center presented its 2nd Annual Bradley Z. Naifeh Amyloidosis Conference. The first day featured medical meetings for neurologists, cardiologists, kidney and blood specialists and others, and the following day offered forums for patients and caregivers.

For the medical professionals portion, attendees learned about the amyloidosis diagnosis, organ involvement, and current and future treatments. The next day, patients and others learned about amyloid and the latest disease advancements.

In addition, a foundation-sponsored support group meeting in Franklin, Tennessee discussed several amyloidosis-related topics, including the journey of caregivers of people with FAP and other forms of amyloidosis.

In Canada, Richmond County, Nova Scotia and the cities of Prince George, British Columbia, and Thunder Bay, Ontario have issued proclamations declaring March as Amyloidosis Awareness Month.

In its proclamation, Thunder Bay noted that “early diagnosis can lead to better outcomes for both patients and their families” and said “raising awareness about all the amyloidosis diseases, including hereditary and non-hereditary forms of the disease, can contribute to the building of healthier communities across Canada.”