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All Things Amyloid

Mackenzie's Mission
Amyloidosis
AL Amyloidosis
Mackenzie's Mission
Amyloidosis Support Groups
Alzheimer's Disease
Heart Transplant
Amyloid Diseases
Parkinson's Disease
Hereditary Amyloidosis
Doctor-Patient Relationship
Bias In Healthcare
Quality Of Life
Peritoneal Dialysis
Self-Advocacy
Clinical Trials
Drive For Five
Advocacy
Patient-Doctor Relationship
Kidney Transplant
Karmanos Cancer Institute

Hi everyone! My name is Mackenzie and I was diagnosed with AL amyloidosis at age 23. We don’t know the cause of this disease, but we do know that it can lead to serious and potentially life-threatening issues. This disease has changed me and my life in so many ways, and as a result, I founded Mackenzie’s Mission to join the fight against this disease.

Part of our effort is to raise awareness whi... more

PublishesTwice monthlyEpisodes47Founded2 years ago
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Health & FitnessMedicine

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Latest Episodes

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Amyloidosis is a great masquerader, presenting with a wide array of seemingly unconnected symptoms. This reality is likely one of the biggest reasons for Amyloidosis being mis- and under-diagnosed.  Patients often go years, seeing s... more

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Thankfully for patients, treatments for amyloidosis continue to advance. One of the newest is CAR-T cell therapy for AL Light Chain amyloidosis. According to the Cleveland Clinic, this therapy targets the B-cell maturation antigen (... more

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In this episode of All Things Amyloid, we hear from Dr. Angela Dispenzieri, hematologist from the Mayo Clinic. Adapted from her video “Why is amyloidosis so often misdiagnosed?”, Dr. Dispenzieri discusses the top three reasons why a... more

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Having AL amyloidosis, a disease that at present is incurable, can be an emotional rollercoaster. Over the course of one’s journey, patients may go on treatment post-diagnosis, go off treatment if they have achieved complete or very... more

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It’s key for front-line healthcare providers to know about amyloidosis and the most common symptoms. They can play a valuable role in early suspicion, leading to early diagnosis, and life-changing benefits for patients. Today our gu... more

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All of us have seen the amazing forward progress over the last 10 years in the battle against amyloidosis – so much has changed -- from knowledge about the disease, to diagnosis, treatment, and patient outlook. It truly is astoundin... more

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In this episode of All Things Amyloid, we hear from Dr. Jeffrey Zonder from the Karmanos Cancer Institute. Adapted from his video “Why is amyloidosis bad for your kidneys?” He provides a brief summary of amyloidosis. He’ll go on to ... more

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Advanced kidney failure can be an unfortunate reality to patients with AL amyloidosis. Physicians often discuss two paths forward - a kidney transplant and dialysis, which is often thought of as a bridge while waiting for a transpla... more

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Recent Guests

Angela Dispenzieri
Hematologist at the Mayo Clinic
Mayo Clinic
Episode: Why Is Amyloidosis So Often Misdiagnosed?
Dr. Kevin Alexander
Advanced heart failure trained cardiologist and assistant professor of cardiovascular medicine at Stanford University School of Medicine
Stanford University
Episode: Amyloidosis For Patients with Dr. Kevin Alexander
Jeffrey Zonder
Physician at Karmanos Cancer Institute, expert on amyloidosis and kidney involvement
Karmanos Cancer Institute
Episode: Why is Amyloidosis Bad for Your Kidneys?
Dr. Nitasha Sarswat
Cardiologist at the University of Chicago
University of Chicago
Episode: Keys to Making a Strong Patient-Provider Relationship
Dr. Michael Dobbs
Associate Dean for Clinical Affairs and Chair of Clinical Neurosciences at Florida Atlantic University's Schmidt College of Medicine
Florida Atlantic University
Episode: The Hidden Thread: Rethinking Amyloid Diseases as One System
Muriel Finkel
Founder of the Amyloidosis Support Groups
Amyloidosis Support Groups (ASG)
Episode: Empowering Patients via the Amyloidosis Support Groups
Kathi Luis
Representative from the Amyloidosis Foundation
Amyloidosis Foundation
Episode: Working with Capitol Hill for Change - You CAN Make a Difference!
Jenelle Murphy
Advocate for her father with ATTR wild-type amyloidosis
Physical therapist by trade; advocate for her father
Episode: The Power of Advocacy
Giada Bianchi
Assistant professor at Harvard Medical School; Associate director of the Amyloidosis Program at Brigham & Women's Hospital and Dana-Farber Cancer Institute
Brigham and Women's Hospital; Dana-Farber Cancer Institute
Episode: What is the Relationship Between AL Amyloidosis and Multiple Myeloma?

Host

Mackenzie
Host of All Things Amyloid

Talking Points

Recent interactions between the hosts and their guests.

To HCPs: Strengthening the Doctor-Patient Relationship With the Black Patient Community
Q: What advice would you give healthcare providers to avoid these pitfalls moving forward?
Approach each patient with humility, practice active listening, be culturally aware, treat patients as equals, and continuously improve bedside manner while acknowledging the realities of burnout.
To HCPs: Strengthening the Doctor-Patient Relationship With the Black Patient Community
Q: What are some examples of how bias in healthcare happens in doctor–patient interactions with Black patients?
Providers may rely on assumptions rather than listening, leading to a paternalistic approach and sometimes delayed or inappropriate care, even when care is well-intentioned.
Isabelle: The Patient and the Advocate
Q: What is ARC and what is its mission?
ARC emerged from a desire to redesign how rare diseases like amyloidosis approach research and patient care, emphasizing collaboration with physicians, policymakers, and other foundations to speed up diagnosis and develop better treatments.
Isabelle: The Patient and the Advocate
Q: What moved you to get involved in advocacy for the amyloidosis community?
Isabelle explains that a mix of prolonged diagnostic delays, lack of accessible information, and the personal impact of the disease motivated her to push for systemic changes, eventually leading to ARC.
Finding My Community of Amyloidosis Patients
Q: What have online groups and these resources meant for you personally?
Linda describes the groups as a safe, vetted space to vent, seek information, and learn from others' experiences, emphasizing the value of center-of-excellence guidance and real-life support from people who understand the disease.

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Frequently Asked Questions About All Things Amyloid

What is All Things Amyloid about and what kind of topics does it cover?

The show centers on amyloidosis, blending patient storytelling with expert medical insight to illuminate diagnosis, treatment, and life with a rare disease. Across episodes, listeners hear from clinicians, researchers, and patient communities about early detection, organ involvement, evolving therapies, and the realities of living with AL and ATTR amyloidosis. A recurring strength is the strong emphasis on advocacy, patient education, and building support networks—covering topics from dialysis and transplantation to policy, accessibility, and clinical trials. A notable feature is the consistent inclusion of patient and caregiver perspectives alongside expert commentary, which helps demystify complex medical concepts and offers practical gui... more

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All Things Amyloid launched 2 years ago and published 47 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on All Things Amyloid?

Recent guests on All Things Amyloid include:

1. Angela Dispenzieri
2. Dr. Kevin Alexander
3. Jeffrey Zonder
4. Dr. Nitasha Sarswat
5. Dr. Michael Dobbs
6. Muriel Finkel
7. Kathi Luis
8. Jenelle Murphy

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