All Things Amyloid

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Almost every amyloidosis patient will agree that they’d never heard the word ‘Amyloidosis’ until they were first diagnosed. Lack of awareness, in combination with Dr. Google, can leave patients feeling lost, hopeless, and alone. In today’s episode we’ll be talking with Linda, an AL amyloidosis patient, about her journey to finding a patient community and the tremendous value this has brought to her life. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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In this episode of All Things Amyloid, the focus is on the two primary treatments available for ATTR amyloidosis. Adapted from his video “ATTR Amyloidosis Treatments: Stabilizers and Silencers,” Dr. Brett Sperry, cardiologist and director of the Cardiac Amyloidosis Program at Saint Luke’s Mid America Heart Institute, provides an excellent overview of FDA-approved ATTR amyloidosis treatments. He goes into detail about the biology behind silencers and stabilizers and exactly how they impair amyloidosis progression. In addition, he previews the future, summarizing new categories of drugs on the horizon. The future is indeed exciting! (Update: In November, 2024 the FDA approved Attruby, and in March, 2025 the FDA approved Amvuttra.) For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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For decades, AL amyloidosis was a disease for which there were no FDA-approved therapies, treatments we did have were often borrowed from multiple myeloma, and resulted in poor outcomes for patients. It is one of the 7,000 diseases classified as a “rare disease,” and over 95% of those have no FDA-approved drug. In 2018 that all changed and it created a cascade of drug approvals, accompanied by a flourishing pipeline of diverse clinical trials. This has launched a world of accelerated research on amyloidosis, giving hope to patients. In today’s episode we’ll be talking with Dan about “hope” and how life with amyloidosis is brighter than ever before. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Listen to Mackenzie in this episode where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium. In this episode, Erin delves into her approach to how she is preparing herself and future generations for hereditary amyloidosis. “It’s all in the green binder.” For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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In today’s episode we’ll be talking about genetic counseling for those impacted by hereditary amyloidosis. This topic is important for patients who have one of the more than 130 types of genetic variants of hereditary amyloidosis. Our guest is Lucas Pereira, a certified genetic counselor at Boston Medical Center’s Amyloidosis Center, who will discuss everything patients need to know. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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What if you are a doctor and diagnosed with amyloidosis, and now you’re a patient? In this episode we’ll be talking with Dr. Charles Schulman, a general cardiologist. He was on the staff at Beth Israel Deaconess Medical Center for over 53 years, until he retired in early 2024. Back in 2020 he was diagnosed with Wild-Type Transthyretin Amyloidosis with cardiomyopathy – or ATTRwt-CM. It’s an interesting situation to be in, with lots of questions to understand how being a doctor impacts your experience as a patient and vice versa. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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There are many views across our patient community on the topic of disease knowledge. Some folks may find it empowering to know as much as they can about amyloidosis. Others may be 180 degrees in the other direction – it’s just not something they want to focus on and prefer to leave it to the experts. And then there are folks in between. In today’s episode we’ll be talking with Darlene, an amyloidosis patient, about staying current on research and treatments. Why does she do it? Where does she do her research, and how often?  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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The treatment for patients with ATTR Transthyretin Cardiac Amyloidosis has advanced significantly since 2018 when there were no FDA-approved therapies. In this episode of All Things Amyloid, we hear from Dr. Mat Maurer at Columbia University. Adapted from his video he shares how diagnostic imaging techniques have significantly improved, thereby reducing the need for an invasive heart biopsy. In addition, he shares fascinating statistics on how the age and stage of diagnosis has been evolving. Based on today’s clinical trials, providers are optimistic that the expansion of options for patient care will continue. The future is indeed looking brighter. His video can be found in the Education Hub on Mackenzie’s Mission website. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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In today’s episode we’ll be talking about turning defense into offense in the fight against amyloidosis. I’m happy to have with me today Mike Lane who is going to share his journey with amyloidosis and how he has turned the tables on the fight against this disease. Mike, thank you so much for coming on the episode today and I am so excited to hear about your new nonprofit Amyloidosis Army (amyloidosisarmy.org)! But, first, let’s start with the highlights of your journey that led you here to today. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Advanced kidney failure can be an unfortunate reality to patients with AL amyloidosis. When approaching this stage, physicians may discuss a kidney transplant. In today’s episode we’ll be talking with Linda about the many considerations of a kidney transplant. She has been battling AL amyloidosis and is now on peritoneal dialysis while waiting for a kidney donor. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).