Events


Amyloidosis Symposium at Washington University in St. Louis

Feb 22

Amyloidosis Symposium at Washington University in St. Louis

February 22, 2020  - February 22, 2020

7:30 am for 3:30 pm

Eric P Newman Education Center @ Washington University Medical Center

 

The Amyloidosis Foundation is proud to be a partner at this event, Amyloidosis: A Disease Now at the Forefront of Practice Latest Diagnostic & Treatment Strategies on February 22, 2020 at Washington University in St. Louis, MO, chaired by our Board of Director, Daniel Lenihan, MD.  This is a symposium for providers, patients and their families. Continuing Medical Education (CME) credits will be available.

Patients touched by amyloidosis and their families are invited to attend the lunch and afternoon session. The breakout sessions will allow attendees the opportunity to ask questions of various medical providers and network.

Guest faculty includes:

Raymond L. Comenzo, MD
Professor of Medicine
Tufts University School of Medicine
Director, John C Davis Myeloma and Amyloid Program
Tufts Medical Center, Boston, Massachusetts

Mathew S. Maurer, MD
Arnold and Arlene Goldstein Professor of Cardiology
Professor of Medicine
Columbia University Irving Medical Center
Director, Cardiac Amyloidosis Program, New York, New York

This course is planned and designed inter-professionally by and for physicians and nurses. This live activity is designed for cardiologist, neurologist, gastroenterologist, oncologist, hematologist, nephrologist, hospitalists, internists, general medicine physicians, physician assistants, nurse practitioners, and nurses, as well as patients and their family.

The intended result of this activity is increased knowledge, competence, performance and skill and enhanced patient care. At the completion of the activity registrants should be able to:

  • State the etiology and epidemiology of both TTR and AL amyloidosis
  • Select appropriate diagnostic approach in amyloidosis
  • Differentiate AL vs TTR in diagnosis of amyloidosis
  • Outline current therapeutic options
  • Describe current research developments in AL and TTR

For more information click here

Patients and families register here


“Light the Night for Amyloidosis” Awareness Campaign

Mar 01

“Light the Night for Amyloidosis” Awareness Campaign

March 1, 2020  - March 31, 2020

 

“Light the Night for Amyloidosis” is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment and hopefully a cure! Since ‘Amyloidosis Awareness Month’ occurs in March, we are asking everyone to light up their porch / entryway with red bulbs for the month of March.

We have also contacted many US landmarks and businesses to do the same in March 2020. Below is a list of the approved requests, along with the date the lighting will occur.

View our growing list here.

We have red light bulbs available for purchase here!  Please join us in our “Light the Night for Amyloidosis” awareness campaign.


The Amyloidosis Foundation Spreads Awareness Through ‘Amyloidosis Awareness Month’ in March 2020

Mar 01

The Amyloidosis Foundation Spreads Awareness Through ‘Amyloidosis Awareness Month’ in March 2020

March 1, 2020  - April 1, 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.