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All Things Amyloid

Mackenzie's Mission

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 Mac

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Episodes

57 episodes

  1. Systemic Amyloidosis: You’ve Got to Think IT to Diagnose IT 12:10
  2. Have Medicare & Amyloidosis? Learn How Medicare Rules Impact Your Amyloidosis Treatment and Out of Pocket Costs 30:18
  3. Becoming Brave Together: The Universal Gift of Caregiving 23:55
  4. Have Medicare & Amyloidosis? How to Make the Most of Your Coverage 33:03
  5. Amyloidosis and the Gut 26:10
  6. Battling the Invisible - Supporting My Emotional Self While Navigating AL Amyloidosis 15:23
  7. Being Proactive in One's Selfcare 24:22
  8. Uncovering My Family Roots 24:47
  9. AL Amyloidosis: The Past, Present, and Future 14:41
  10. Genetic Counseling 101 19:15
  11. What ‘clues’ can PM&R providers watch for to suspect Amyloidosis? 14:08
  12. I Just Had CAR-T – What Was It Like? 17:10
  13. Why Is Amyloidosis So Often Misdiagnosed? 19:32
  14. When to Consider Discontinuing Maintenance Therapy? 17:40
  15. Physical Therapists - Be On The Lookout! 30:55
  16. Amyloidosis For Patients with Dr. Kevin Alexander 31:46
  17. Why is Amyloidosis Bad for Your Kidneys? 20:19
  18. An AL Patient Going Through Peritoneal Dialysis 37:03
  19. Keys to Making a Strong Patient-Provider Relationship 29:27
  20. Amyloidosis Destroyed My Heart; Organ Transplantation Gave Me Life 12:09
  21. If I Could Redo My Diagnostic Journey What Would I Do Differently? 15:47
  22. The Hidden Thread: Rethinking Amyloid Diseases as One System 17:10
  23. Empowering Patients via the Amyloidosis Support Groups 21:25
  24. How a Diagnosis of Amyloidosis Has Impacted Our Family 29:32
  25. Working with Capitol Hill for Change - You CAN Make a Difference! 12:03
  26. Finding My Voice 15:18
  27. The Power of Advocacy 35:44
  28. What is the Relationship Between AL Amyloidosis and Multiple Myeloma? 25:19
  29. Relapsing - What’s Next? 23:52
  30. Isabelle: The Patient and the Advocate 12:02
  31. The Systemic Amyloidoses vs Parkinson’s vs. Alzheimer’s 18:45
  32. When the Caregiver Becomes the Patient 42:42
  33. To HCPs: Strengthening the Doctor-Patient Relationship With the Black Patient Community 10:27
  34. Cardiac Amyloidosis - AL and ATTR: Two Different Conditions 17:05
  35. An AL Patient’s Journey Through Kidney Transplant and Organ Donation Advocacy 39:19
  36. Finding My Community of Amyloidosis Patients 20:48
  37. ATTR Amyloidosis Treatments: Stabilizers and Silencers 17:55
  38. Amyloidosis is No Longer a Death Sentence - There is HOPE 23:59
  39. Preparing Future Generations for an Inherited Disease ("green book") 20:07
  40. Amyloidosis Genetic Counseling - What You Need to Know 18:55
  41. When the Doctor Becomes an Amyloidosis Patient 39:51
  42. Ideas on How to Stay Current on Research and Treatments 16:31
  43. The Future for Patients with ATTR Cardiac Amyloidosis is Brighter 17:55
  44. Going on Offense in the Fight to Make a Difference 31:13
  45. Contemplating a Kidney Transplant 31:03
  46. Closing the Medical Education Gap 11:05
  47. Finding a “New Normal” Life 18:46
  48. A Diagnostic journey - Uncovering A Family’s Disease 12:32
  49. Nurses are Valued Members of Our Care Team 29:46
  50. Shining Your Light Through Chronic Illness 16:02