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About This Podcast
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!
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Recent Episodes
If I Could Redo My Diagnostic Journey What Would I Do Differently?
Send a textWe 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…
The Hidden Thread: Rethinking Amyloid Diseases as One System
Send a textAmyloid 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…
Empowering Patients via the Amyloidosis Support Groups
Send a textFor 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…
How a Diagnosis of Amyloidosis Has Impacted Our Family
Send a textWhen 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…
Working with Capitol Hill for Change - You CAN Make a Difference!
Send a textOur 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…
Finding My Voice
Send a textNot 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…
The Power of Advocacy
Send a textIn 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…
What is the Relationship Between AL Amyloidosis and Multiple Myeloma?
Send a textIn 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…
Relapsing - What’s Next?
Send a textWhen 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…
Isabelle: The Patient and the Advocate
Send a textIsabelle 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…
The Systemic Amyloidoses vs Parkinson’s vs. Alzheimer’s
Send a textIn 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…
S1E26 When the Caregiver Becomes the Patient
Send a textWhat 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…
S1E25 To HCPs: Strengthening the Doctor-Patient Relationship With the Black Patient Community
Send a textThe 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…
S1E24 Cardiac Amyloidosis - AL and ATTR: Two Different Conditions
Send a textIn 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…
S1E23 An AL Patient’s Journey Through Kidney Transplant and Organ Donation Advocacy
Send a textFor 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…
S1E22 Finding My Community of Amyloidosis Patients
Send a textAlmost 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…
S1E21 ATTR Amyloidosis Treatments: Stabilizers and Silencers
Send a textIn 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…
Amyloidosis is No Longer a Death Sentence - There is HOPE
Send a textFor 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…
Preparing Future Generations for an Inherited Disease ("green book")
Send a textListen 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…
Amyloidosis Genetic Counseling - What You Need to Know
Send a textIn 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…
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All Things Amyloid has published 37 episodes since October 2024, covering topics in Health & Fitness, Medicine.
All Things Amyloid is currently highly active with new episodes every 2 weeks. Average episode length is 20m.
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