7151 N. Main St. Ste. 2 Clarkston, MI 48346
248-922-9610

2026 Winter Newsletter

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LTN Info and Toolkit

AL Amyloidosis

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Amyloidosis Awareness Items

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Hereditary Amyloidosis

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The Amyloidosis Channel

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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 Amyloidosis Journey

Kelley Jenkins

Who would have known my journey would involve dealing with amyloidosis? I know I didn’t—that was not on the bingo card I would have chosen for myself, especially at the age of 47. In life, we often feel least susceptible to what can happen to us. As I was living my normal life, I began experiencing some health challenges starting...
Read the Full Story

Latest Headlines

2026 Winter Newsletter

January 15, 2026

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

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Calendar & Upcoming Events

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.

Emerging Roles of TTR in ATTR-CM and Your Overall Health

When


May 6, 2026    

6:00 pm - 6:45 pm

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

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

To Register HERE

What is transthyretin (TTR) and why does it matter so much in amyloidosis? This session breaks down the role of TTR in the body, how it becomes unstable, and what leads to amyloid buildup.

Speaker:  Sarah Paciulli is a certified family nurse practitioner who founded VCU Health’s cardiology navigator program and leads transitional care for heart failure and myocardial infarction patients. She specializes in cardiac amyloidosis, contributes to clinical research and state advisory efforts, and has received multiple awards for clinical excellence.

 

ATTR-CM how do I know my treatment is working?

When


April 29, 2026    

6:00 pm - 6:45 pm

Webinar Session: Wednesday, April 29th at 6 PM (ET) Zoom Meeting

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

To Register HERE

Wondering if your ATTR-CM treatment is truly working? Learn how to track meaningful signs of progress, what tests and symptoms matter most, and how to partner with your care team. Walk away with practical tools to assess your response and make confident, informed decisions about your care.

Speaker: Rebecca R. Hung, M.D., Ph.D., is an assistant professor of clinical medicine in the Division of Cardiovascular Medicine at Vanderbilt University Medical Center.

 

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

Red Light Bulb

**LOW STOCK** Light the night for Amyloidosis with this red light bulb to commemorate amyloidosis month in March. Light up your home or business with red lights to raise awareness. Standard size LED 9 watt (equivalent to 60 watt) red light bulb
$6.00

Our Latest Webinar

The Changing Paradigm of Amyloidosis Treatment

Jeffrey Zonder, MD

Karmanos Cancer Institute, Detroit, MI

July 10, 2025

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