エピソード

  • To HCPs: Strengthening the Doctor-Patient Relationship With the Black Patient Community
    2025/09/03

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    The doctor-patient relationship is so important to a patient’s journey, especially when dealing with a complex disease like amyloidosis. Listen to Mackenzie where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium about how this relationship can be strengthened within the Black community. In this episode Erin emphasizes the importance of addressing and mitigating biases in the doctor-patient relationship to encourage positive communication and trust within the Black community. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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    10 分
  • Cardiac Amyloidosis - AL and ATTR: Two Different Conditions
    2025/08/20

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    In this episode of All Things Amyloid, we hear from Dr. Mazen Hanna, cardiologist at the Cleveland Clinic and co-director of the Amyloid Program. Adapted from his video “Cardiac Amyloidosis - AL and ATTR: Two Different Conditions” he explains how cardiac amyloidosis can originate from two very different types of amyloidosis: AL (light chain) or ATTR (transthyretin). Dr. Hanna illustrates how clinicians can identify cardiac amyloidosis and look to different diagnostic work-ups to understand whether the issues are due to AL or ATTR amyloidosis. These two conditions are treated differently and have different prognoses, emphasizing the importance of identifying the type of amyloidosis involved. 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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    17 分
  • An AL Patient’s Journey Through Kidney Transplant and Organ Donation Advocacy
    2025/08/06

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    For AL amyloidosis patients, the kidney is one of the most commonly impacted organs. Rigid amyloid fibrils can infiltrate the organ and impair function. And when diagnosed late, the kidney can be in late stage kidney failure. At that point there are two options for patients - dialysis or kidney transplant. In today’s episode we’ll be talking with Mark McIntosh about his kidney transplant journey and how he has become a kidney donation advocate through Drive for Five (www.dffnetwork.org). For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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    39 分
  • Finding My Community of Amyloidosis Patients
    2025/07/23

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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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    21 分
  • ATTR Amyloidosis Treatments: Stabilizers and Silencers
    2025/07/09

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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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    18 分
  • Amyloidosis is No Longer a Death Sentence - There is HOPE
    2025/06/25

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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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    24 分
  • Preparing Future Generations for an Inherited Disease ("green book")
    2025/06/11

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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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    20 分
  • Amyloidosis Genetic Counseling - What You Need to Know
    2025/05/28

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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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    19 分