Most people are unfamiliar with amyloidosis, often diagnosed late since they are unaware of what this rare disease is or what symptoms to look for. The Amyloidosis Foundation is working to change that, declaring March as Amyloidosis Awareness Month.
We began in 2018, by passing state resolutions to recognize Amyloidosis Awareness Month in Tennessee, Michigan and Louisiana. Indiana passed a resolution in January 2019, followed by Florida. We have advocates working on similar legislation in the following states for 2020: Alabama, Arkansas, California, Florida, Georgia, Kentucky, Massachusetts, North Carolina, New York, Ohio, Oregon, Pennsylvania, Texas, Utah, Virginia, Washington and Wisconsin.
The AF is encouraging patients, caregivers, physicians and donors to participate this March by using the hashtag #amyloidosisawareness on all social media platforms. By spreading amyloidosis awareness online, this will increase the chances that others will be diagnosed and treated earlier, which is an important part to creating positive outcomes for all patients.
In 2020, “Light the night for amyloidosis” is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment and hopefully a cure! We thought this campaign would go perfectly with Amyloidosis Awareness Month. We are asking everyone to light up their porch/entryway with red bulbs for the month of March. Bulbs can be purchased on our website at: http://amyloidosis.org/products/
We are also asking some landmarks and businesses across the world to do the same in March. The current list of those lighting up for amyloidosis can be found at: http://amyloidosis.org/light-the-night-for-amyloidosis-awareness-campaign/. We ask that if you are close to one of these lightings, that you take a picture and post to social media with the hashtags #LightTheNightForAmyloidosis #LTNFA #AmyloidosisAwareness and don’t forget to tag the Amyloidosis Foundation or send the picture to [email protected]
We are thankful that in the Summer of 2018, two therapies were approved by the FDA for ATTR amyloidosis, which is the hereditary type of this disease. There was another therapy that was approved in 2019. For more information about Amyloidosis Awareness Month, “Light The Night For Amyloidosis” or if you’d like to become an advocate, email [email protected]