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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 which, we believe, will accelerate diagnosis, enable earlier treatment, and improve patient lives. We do this in several ways, including our “All Things Amyloid” podcast. In our episodes, we will speak with patients and caregivers about their journey on a wide array of topics. We will also hear from amyloidosis experts about the medical side of this disease.
There is more hope for patients than ever before, and raising awareness around the globe is critical to improving patient lives. If you want to learn more about the work we’re doing at Mackenzie’s Mission, please visit mm713.org. Thanks for listening!
27 Episodes
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Send us a text In 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 Current medical education on amyloid diseases is 25 years old and materially outdated, punctuated by rapid advancement in the last decade.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 diseas...
Send us a text What 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 50/5...
Send us a text 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...
Send us a text 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 t...
Send us a text 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.dffnet...
Send us a text 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 e...
Send us a text 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 ...
Send us a text 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 accel...
Send us a text 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).
Send us a text 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 patient...
Send us a text 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 i...
Send us a text 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?...
Send us a text 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...
Send us a text 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 le...
Send us a text 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).
Send us a text Lack 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 tradit...
Send us a text Life 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 a text Listen 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 ...
Send us a text Nurses. 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 a text While 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 ...
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