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2026 Spring Newsletter

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AL Amyloidosis

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Hereditary Amyloidosis

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Patient Education Activity

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What is Amyloidosis?

AMYLOIDOSIS is a term that represents several different types of diseases where an abnormal protein called amyloid is produced. These amyloid protein fibers can attach and deposit into organs, tissues, nerves, and other places in the body. When that happens, normal function of the area can be affected. As the amyloid protein increases, health problems and organ damage may occur. “OSIS” means increased, or an abnormal, supply of AMYLOID protein.

Most amyloidosis diseases have different treatments; therefore, the correct diagnosis is extremely important.

Featured Patient Story

My hTTR-PN Journey

Tisha Downing

About a year ago, my health took a sudden and frightening turn. I had been living with Ehlers-Danlos Syndrome (EDS) and POTS, so I was no stranger to chronic illness. But this felt different. My symptoms quickly escalated beyond anything I had experienced before. I fainted in my bathroom, resulting in a minor concussion. My shortness of breath became so...
Read the Full Story

Latest Headlines

2026 Spring Newsletter

April 30, 2026

Be sure to catch up on the latest happenings in our spring newsletter here!

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Calendar & Upcoming Events

If I Knew Then What I Know Now: Lessons learned along my journey treating patients with Amyloidosis and in life

When


May 20, 2026    

6:00 pm - 6:45 pm

Webinar Session: Wednesday, May  20th at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

If I Knew Then What I Know Now: Lessons learned along my journey treating patients with Amyloidosis and in life

Join us for an intimate session where fellow amyloidosis patients and caregivers share valuable lessons they’ve learned through their journeys. This gathering is a chance to exchange personal insights and practical tips that only experience can teach. Please bring one lesson you’ve learned to share with the group, as we cultivate a supportive space to learn from each other and strengthen our community. Together, we can enhance our ability to manage amyloidosis with knowledge, empathy, and collective wisdom.

Speaker: Stacey Goodman, MD completed her hematology training at the NIH and Vanderbilt University before joining the faculty in 1993. She helped create and lead the Vanderbilt Amyloidosis Multidisciplinary Program (VAMP) until her retirement in 2021. She currently serves as a member of the board of directors at the Amyloidosis Foundation.

Amyloidosis Patient Profile: How I Changed My Life for the Better After Receiving an Amyloidosis Diagnosis

When


May 13, 2026    

6:00 pm - 6:45 pm

Webinar Session: Wednesday, May 13 at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

Amyloidosis Patient Profile: How I Changed My Life for the Better After Receiving an Amyloidosis Diagnosis

Speaker:  Alison Keenan : I am a Registered Nurse, diagnosed with AL in 2014. I has an Autologous Stem Cell Transplant in 2015 after receiving CyBorD chemotherapy. I have had impact to my kidneys specifically. I have appreciated Total Response for the last 9 years but have recently experienced a slight increase in my light chains with a decrease in my EGFR. I am on every 3 month lab value observation hoping to avoid further chemo. I am an active advocate in increasing awareness of AL and attend a support group in Nashville. My transplant was done at Froedtert and Medical College of Wisconsin and then I moved to Tennessee 3 years later and get care thru Vanderbilt. I am an Educator/Evaluator for Intermountain Therapy Animals and have a Therapy Dog Team. I am author of a children’s book about my Therapy Animal.

Cardiac transplantation in amyloidosis – who, when, and (then) what

When


April 22, 2026    

6:00 pm - 6:45 pm

Webinar Session: Wednesday, April 22nd at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

When is a heart transplant considered in amyloidosis, and who qualifies? In this session, we break down how doctors evaluate candidacy, how disease type (ATTR vs AL) and timing impact outcomes, and what life looks like after transplant. We’ll cover risks, recovery, and how transplant fits with modern therapies so you can make informed decisions with your care team.

Speaker:  Dr. Hasan Siddiqi is an advanced heart failure cardiologist who is the director of the cardiac amyloidosis program and assistant professor of medicine at Vanderbilt Univ Medical Center in Nashville, TN. He is board certified in internal medicine, cardiology, heart failure, cardiac transplantation and echocardiography. Dr. Siddiqi is involved in multiple studies and trials in the treatment of cardiac amyloidosis patients, as well as being developing a novel research program for cardiac amyloidosis at Vanderbilt University. In addition to cardiac amyloidosis, Dr. Siddiqi also manages patients with heart failure, ventricular assist devices and heart transplantation in his clinic, in the ICU and inpatient units. Dr. Siddiqi graduated from Harvard College with a degree in neurobiology, then went to the Univ of Michigan for medical school and his masters in clinical research, followed by residency at the University of Pennsylvania. He then pursued cardiology, heart failure and transplantation fellowships at Brigham and Women’s Hospital/Harvard Medical School, following which he was appointed assistant professor of medicine at Vanderbilt Univ. He lives with his wife and two young children in Nashville, TN.

Amyloidosis Videos

This section features a collection of informative videos that provide valuable insights into amyloidosis. Watch expert-led content on various aspects of the condition, from diagnosis to treatment, to deepen your understanding and stay informed.

Featured Product

One day at a time T-Shirt

FLASH SALE:  Pick up this shirt for $15.00 while supplies last! Wear our shirt and increase amyloidosis awareness in your community! 100% cotton - heathered oatmeal
$15.00
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Our Latest Webinar

Cardiac Amyloidosis – What You Need To Know

Hasan K. Siddiqi, MD, MSCR, FACC

Vanderbilt Health, Nashville, TN

May 7, 2026

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