The Amyloidosis Foundation Spreads Awareness Through ‘Amyloidosis Awareness Month’ in March 2020
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 kathi@amyloidosis.org.
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
kathi@amyloidosis.org.