All Things Amyloid

Send us Fan MailAll 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 astounding! To help us understand where we are today, and looking ahead to tomorrow, we are delighted to chat with Dr. Kevin Alexander, cardiologist from Stanford University to hear his insights for these exciting times. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn 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 describe how AL and AA are the two most prevalent types to affect the kidneys, detail how amyloidosis affects the kidneys, how this damage is assessed, and strategies for reducing kidney damage. 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).

Send us Fan MailAdvanced 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 transplant. There are two basic types - hemodialysis and peritoneal dialysis. In today’s episode we’ll be talking about peritoneal dialysis, or PD for short, with Linda. She has been battling AL amyloidosis for ten years and is now on dialysis while waiting for a kidney transplant. Listen to hear what life is like for patients like Linda. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailThe relationship between a patient and their provider is so important. It serves as a foundation upon which trust is built, expertise is shared, and life-impacting decisions are made. But it’s not automatic that the relationship is good. In today’s episode we’ll explore keys to making a strong patient-provider relationship with two wonderful guests – patient Giselle and her provider Dr. Nitasha Sarswat, cardiologist at the University of Chicago.  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailAmyloidosis is a ruthless disease, attacking organs, leading them towards failure when left untreated. Fortunately there are treatments that can help slow disease progression, with more hope on the way in clinical trials. But what about the diseased organ, infiltrated with those rigid amyloid fibrils? Until there is a solution to address breaking down these fibrils, organ transplantation can be a leading choice for patients to consider. In this episode we’ll talk with Rayna, an AL survivor, who successfully underwent a heart transplant. But it wasn’t an easy path to get there. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailWe all have “hindsight is 20/20” vision, and for us patients, the majority of us can look back at our own diagnostic journey and identify actions we perhaps should have done something differently. And while we can’t go back in time, nor can we ignore the significant advancements in amyloidosis regarding the knowledge, awareness, and treatments of amyloidosis, we can offer insights that might help others that are earlier in their diagnostic journey. In this episode I’ll chat with Jerry about his thoughts on what he’d do differently looking back today. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailAmyloid diseases are often seen as separate conditions — from Alzheimer’s to certain heart or kidney disorders — but they all share a common culprit: amyloid proteins that misfold and accumulate in the body. In this episode, we’ll explore with Dr. Michael Dobbs from Florida Atlantic University why understanding the common thread across these diseases could change the way we raise awareness, approach research, and develop treatments. Listeners will gain a fresh perspective on a group of diseases that affect millions, often quietly, and why seeing the bigger picture matters. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailFor over two decades, Muriel Finkel has been running the Amyloidosis Support Groups (ASG). She’s a pillar in the industry and everyone knows her name. Her rolodex of physicians is unparalleled, and they all love her. The ASG is an extremely valuable resource for patients and caregivers, providing far more than just knowledge. Learning about current and potential treatments, advancements in the disease, and connecting with other patients and caregivers are just a few of the benefits. Hear from Muriel directly, who will share what she thinks is the #1 benefit the ASG offers. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailWhen a crisis hits a family member, of course you’ll be there to support and help them however you can. Perhaps they have always been there for you, and now it’s their turn. It may come when you may least expect it, so you juggle your life to be there. In today’s episode we’ll talk with Trent about how a diagnosis of amyloidosis for his mom Brenda has impacted their family. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailOur government drafts, debates, and approves laws that govern important areas of our amyloidosis community. These laws can impact things like funding for research, patient access to treatments, and cost relief for patients (e.g., co-pay relief). As we will hear in today’s discussion with Kathi Luis from the Amyloidosis Foundation, it is absolutely critical that the voice of our community is heard by our legislators so they are aware of our issues and can work to design and advance appropriate solutions. To our listeners, if this is something you would like to learn more about or get involved with, contact Kathi Luis at [email protected]. Please remember her words … you can make a difference! For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailNot everyone is wired to be outgoing and assertive. For them, finding their voice to advocate for themself may well be easy. But for others, finding their voice and confidence to communicate with their healthcare team may be extremely challenging. In this episode I’ll speak with Liz who will share her journey to find her voice, and how that has transformed her relationship with her medical team. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn this episode, our guest, Jenelle Murphy, is here to talk about her experience advocating for her father, Albert Sanders, who unfortunately had a long journey with ATTR wild-type amyloidosis. Throughout his life he had more than 20 major surgeries, some of them caused by amyloidosis, but it wasn’t until he was 65 that he was appropriately diagnosed. Leading up to his diagnosis he started having cardiac symptoms and Jenelle had to advocate for him throughout his journey to make sure he received the best, safest care. This personal story really shows how powerful and important advocating for yourself, your loved ones, or a friend really is. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn this episode of All Things Amyloid, we hear from Dr. Giada Bianchi, hematologist at the Amyloidosis Program at Brigham & Women’s Hospital and Dana-Farber Cancer Institute. Adapted from her video, hear about the relationship between AL amyloidosis and multiple myeloma. While both AL amyloidosis and multiple myeloma are plasma cell disorders and share similar patient care treatments, they diverge in pathogenic mechanisms. It’s important to note that approximately 10-15% of multiple myeloma patients will experience overlapping AL Amyloidosis, elevating the importance of understanding the similarities and differences in diagnostic criteria and patient care. In this presentation, Dr. Bianchi outlines the distinguishing diagnostic criteria between the two, why only one is considered cancer. Her 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).

Send us Fan MailWhen you have an incurable disease that has treatments available, like amyloidosis, unfortunately it does not necessarily mean there is a cure. Treatments can be effective in getting the disease under control and reducing side effects, but patients are continually monitored to ensure the disease doesn’t relapse. And if at some point the disease reactivates, emotions can come alive. In today’s episode we’ll be talking about relapsing and what patients may go through when that happens. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIsabelle was diagnosed some 29 years ago. Struggling with symptoms, no treatments available other than being one of the earliest to have a stem cell transplant, and a new husband … she had so much going on. But her disease burden improved, and although she’ll forever be a patient, she became an advocate. Listen as we chat about life yesterday, today, and tomorrow. No doubt you’ll be inspired! To learn more about the Amyloidosis Research Consortium, visit arci.org.  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn this episode of All Things Amyloid, we hear from renowned researcher Dr. Jeff Kelly from Scripps Research, pioneer in the field of amyloidosis. Current medical education on amyloid diseases is 25 years old and materially outdated, punctuated by rapid advancement in the last decade. Adapted from his video “The Systemic Amyloidoses vs Parkinson’s vs. Alzheimer’s” hear from Dr. Kelly, developer of ATTR amyloidosis drug Tafamidis, about the current biology and how amyloid diseases such as the Systemic Amyloidoses (ATTR and AL), Parkinson’s and Alzheimer's are today believed to be more similar than different. 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).

Send us Fan MailWhat if you’re a caregiver for one of your parents as they live with the symptoms of a devastating disease - hereditary amyloidosis? You have to watch them deteriorate, see their life become more difficult, and you knew that at the time there were no treatments available. You dig in to do your research and discover that amyloidosis goes back at least 5 generations in your family. In addition, research reveals future generations, including yourself and your children, have a 50/50 chance of testing positive. The good news is there are now treatments available to slow the progression of the disease.  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailThe 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).

Send us Fan MailIn 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).

Send us Fan MailFor 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).

Send us Fan MailAlmost 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).

Send us Fan MailIn 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).

Send us Fan MailFor 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).

Send us Fan MailListen 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).

Send us Fan MailIn 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).

Send us Fan MailWhat 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).

Send us Fan MailThere 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).

Send us Fan MailThe 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).

Send us Fan MailIn 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).

Send us Fan MailAdvanced 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).

Send us Fan MailLack of awareness, a gap in medical education, is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. In this episode you’ll hear from medical educators, amyloidosis experts, and patients about how the Amyloidosis Speakers Bureau (ASB) brings the patient voice to medical education and complements traditional didactic and clinical studies. Together, this narrows the education gap and results in a more robust and durable education of medical trainees, thereby accelerating diagnosis and improving patient lives. The video of this presentation 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).

Send us Fan MailLife is filled with uncertainty and can change in an instant, resulting in life-changing implications. In today’s episode we’ll be talking with hereditary amyloidosis patient Sean about his diagnosis and how it impacted just about all facets of his life. We’ll talk about changes he chose to make, and how they have defined a “New Normal” life for him. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailListen to Mackenzie in this episode of a nine part series where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium, about the tumultuous road that led to the discovery of a rare and mysterious unknown genetic mutation in her family. Doctors were puzzled over an array of symptoms and a genetic test revealed the truth. Learn how Erin navigates grief and uncertainty, but rallies with a mission to increase knowledge, encourage earlier genetic testing, diagnosis, and treatment with the hope of a brighter future for those who carry the mutation or have been diagnosed with active hereditary amyloidosis, V122i mutation.  “Your father may have given you a disease, but he also gave you a roadmap.” Dr. John Berk, Amyloidosis Center at Boston Medical Center. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailNurses. Not enough can be said about their role in our care team and what they bring to the table. They truly are vital members of our care team. In today’s episode we’ll be talking with Jill Fleck, an amyloid clinic RN care coordinator at Mayo Clinic in Arizona. In our discussion, we’ll chat about nurses and why it’s important for patients to get to know them. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailWhile living with a chronic illness, especially a difficult one like amyloidosis, patients may experience periods of emotional darkness, where the proverbial glass is half empty. Powerful feelings, such as despair and depression, can overtake any positives of the situation. For many patients, moving from darkness into the light can offer hope, joy, and happiness from life in a new way. In today’s episode, Mackenzie and Gesna will discuss their own journeys through darkness and into light, and the power of shining that light in their own individual way. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailAmyloidosis is a complex, challenging disease - it’s a journey like no other. And what’s clear is that we patients can’t travel this journey alone. Many of us need a support team at some point. But how do you know what you need, where you can turn for help, and who does what? In today’s episode we’ll be talking with Linda, an AL amyloidosis patient, about ideas for assembling a support team. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailIn this episode of All Things Amyloid, we are reminded how early diagnosis of amyloidosis, and the earlier the better, improves patient survival and quality of life. Adapted from his video “Building an Index of Suspicion for Cardiac Amyloidosis” Dr. Justin Grodin, a cardiologist and co-director of the UT Southwestern Multidisciplinary Amyloidosis Program, discusses early symptoms, family history, and red flags to be aware of in order to build a clinical index of suspicion for cardiac amyloidosis. 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).

Send us Fan MailThe disease journey for all patients is punctuated with important points along the way - such as diagnosis and treatment. Amyloidosis, being a complex and not-well known disease, makes the journey all the more turbulent. For example, tests may imply a false-positive, or ill-informed providers may not be fully versed on the disease, either of which could lead to a mis-diagnosis. Or deciding which treatment is the appropriate path for a patient is another inflection point. We know providers always seek to do the best for their patients; however, there may be times where having another provider provide their opinion may be appropriate. That’s the topic for this episode - seeking a second opinion. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailOver and over I hear from patients that prior to diagnosis they knew something was wrong. No matter what the doctor said or what they saw in the test results, something was just not right. In today’s episode we’ll be talking about that feeling patients can have, their sense that something is wrong, and how that is an important motivator to keep searching for answers. I’m happy to have Dan, a fellow AL amyloidosis patient, with me to talk about patients’ “sixth sense.” For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

Send us Fan MailThis episode of All Things Amyloid is an adaptation of Amyloidosis Support Groups’ patient education video narrated by Michael York. You’ll hear a brief yet comprehensive overview of amyloidosis designed specifically for patients. It discusses what amyloidosis is, the wide range of symptoms, and which organs are typically involved. It focuses on the most common types, AL (light chain) and TTR (transthyretin), and summarizes the kinds of treatments that are currently available. The video can be found on AmyloidAware.com.

Send us Fan MailIn this episode of All Things Amyloid, Dr. Sarah S. Lee, Assistant Professor, Division of Hematology, at the City of Hope, provides a brief yet comprehensive clinical overview of amyloidosis. Dr. Lee discusses what is amyloidosis, most common types, the wide range of symptom presentations, and which organs are typically involved. Focusing on AL (light chain) and TTR (transthyretin), she then goes through a diagnostic workup to arrive at a diagnosis, stressing the importance of typing once the presence of amyloid has been confirmed. In conclusion, Dr. Lee describes treatments available and how they impact patient quality of life and prognosis. The video of her PowerPoint presentation can be found on our YouTube channel HERE.

Send us Fan MailIn our inaugural episode, hear from Mackenzie on why she founded Mackenzie’s Mission, how her foundation works to make a difference in the amyloidosis community, and what you can expect from the All Things Amyloid podcast. We hope you’ll join us!