Send us a text

When 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 a text

Isabelle 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 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 Current medical education on amyloid diseases is 25 years old and materially outdated, punctuated by rapid advancement in the last decade.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 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 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 50/50 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 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 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 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 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 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.dffnetwork.org).  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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 episode 3 (for patients).

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 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 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 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).