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.

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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

Brandpoint (BPT) – Posted: Wednesday, December 11, 2019 4:31 am

(BPT) – A disease called hereditary ATTR amyloidosis (hATTR) is linked to a genetic mutation that has been passed through generations of Americans with ancestors from West African countries such as Ghana, Sierra Leone, Cote d’Ivoire, and Nigeria. hATTR amyloidosis is difficult to diagnose and often missed by doctors and patients because its symptoms and related complications, which include numbness, tingling or loss of sensation in the hands and feet, dizziness, and fainting, are similar to those of common conditions such as diabetes and hypertension (high blood pressure). But unlike these conditions, which are frequently recognized and can be managed through a combination of lifestyle factors and a variety of available medicines, hATTR amyloidosis is a complex, multi­-system disease that worsens over time if not addressed. Today, accurate genetic tests that diagnose hATTR amyloidosis are readily available, so early action is important.

 Click here to read the full article.

The Amyloidosis Foundation is thankful for the amazing generosity from our friends and donors on #GivingTuesday. You helped us surpass our goal of raising $20,000 in 24 hours by soaring past that with close to $30,000 in online donations and Facebook fundraisers.

Over the past 16 years, the Amyloidosis Foundation has been privileged to provide over $1.97 million to medical research for the disease and to support dozens of young investigators who have presented their work at international meetings. We are so very thankful to our donors, to the patients and families and corporate sponsors who have made this effort possible and to our staff, board members and advisors who have led us in these endeavors.

If you would still like to donate, use our online link here.

The ABCs of Amyloidosis: The Journey From Diagnosis to Treatment

This article is for people who have amyloidosis, or anyone who wants to learn more about this disease. The goal of this patient education activity is to inform you about amyloidosis, so that you can take a proactive role in your treatment and care.

Click here to be directed to this patient education activity.

“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.

We are pleased to announce the funding of three new research projects. The Donald C. Brockman Memorial Research Grant has been awarded to Mark Rank, PhD of Johns Hopkins University. His study revolves around cardiac amyloidosis. The David Seldin, MD, PhD Memorial Research Grant recipient is Susan Bal, MBBS of the University of Alabama-Birmingham. Her study will focus on Light Chain (AL) amyloidosis. The third grant is awarded to Renato Polimanti, PhD of Yale University of Medicine. His research is geared towards wild-type ATTR.

The Amyloidosis Foundation has awarded over $2 million to research since the inception of the grant program in 2005.

Click here for photos and to read more about their proposals.

Congratulations!

This year, #GivingTuesday is December 3, 2019.  #GivingTuesday is a global day of giving.  Celebrated on the Tuesday following Thanksgiving and the widely recognized shopping events Black Friday and Cyber Monday.  #GivingTuesday kicks off the charitable season, for holiday and year-end giving.  You have the power to create change!

Please help the Amyloidosis Foundation support research and raise awareness of amyloidosis by donating to #GivingTuesday.

Donate Here

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