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In this video, Sean Riley from New Hampshire shares his health journey with amyloidosis, a rare genetic condition caused by mutations in certain genes that lead to the abnormal production of amyloid proteins. These proteins misfold and deposit in tissues and organs, disrupting their normal function. Sean is a speaker and advocate for the Amyloidosis Speaker Bureau and explains the disease burden of ATTR‐CM from a patient perspective and the value of treatments for amyloidosis to improve the quality of life for patients with this hereditary condition.
This patient perspective video was developed for the AMCP Nexus 2024 grant-funded session, D3 Rare Disease Spotlight: Transthyretin Amyloidosis Cardiomyopathy (ATTR‐CM) Disease Burden, Unmet Needs, and Treatment Advances.
View Session: https://amcplearn.org/content/....rare-disease-spotlig
View other patient stories and disease state resources to inform health care decision-making at: https://www.amcp.org/patient-j....ourneys-shaping-heal


Cardiac amyloidosis is a condition affecting over 300,000 people globally with rogue proteins invading the heart. This condition has long been a diagnostic puzzle but hope is on the horizon!
In case you missed it, the FDA has approved BridgeBio’s (BBIO) Acoramidis, also known as Attruby, a transthyretin stabilizer revolutionizing care for ATTR-CM. And that’s not all!
Vutrisiran, a promising RNA interference therapy, is making waves by reducing TTR production and cardiac events for ATTR amyloidosis patients. These breakthroughs are saving lives—and driving innovation.
If you are an accredited investor who is passionate about saving lives while growing your investment portfolio, Evergrowth Biohealthcare Capital can be a good fit for you.
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Disclaimer: As a medical doctor/market expert, I’m not a registered investment advisor. Despite that I strive to provide the most accurate information, I neither guarantee the accuracy nor timeliness. Past performance does NOT guarantee future results. I reserve the right to make any investment decision for myself and my affiliates pertaining to any security without notification except where it is required by law. I am also NOT responsible for the actions of my affiliates. The thesis that I presented may change anytime due to the changing nature of information itself. Investment in stocks and options can result in a loss of capital. The information presented should NOT be construed as a recommendation to buy or sell any form of security. My articles and videos are best utilized as educational and informational materials to assist investors in your own due diligence process. That said, you are expected to perform your own due diligence and take responsibility for your actions. You should also consult with your own financial advisor for specific guidance, as financial circumstances are individualized. That aside, what I shared with you is not professional medical advice. I simply share with you what I share with my own family to help get more out of your life.


In this episode we discuss the management of newly diagnosed AL amyloidosis with Dr. Angela Dispenzieri from the Mayo Clinic.
Here are the key articles discussed:
1. Optimal use of tissue biopsy in AL amyloidosis: https://pubmed.ncbi.nlm.nih.gov/28271734/
2. Mayo 2004 staging: https://pubmed.ncbi.nlm.nih.gov/15365071/
3. Mayo 2012 staging: https://www.ncbi.nlm.nih.gov/p....mc/articles/PMC36756
4. Renal staging: https://pubmed.ncbi.nlm.nih.gov/25115890/
5. Hematologic and cardiac response criteria in AL amyloidosis: https://pubmed.ncbi.nlm.nih.gov/23091105/
6. ANDROMEDA Trial: Dara-VCD vs VCD in newly diagnosed AL amyloidosis: https://pubmed.ncbi.nlm.nih.gov/34192431/
7. How I Treat AL Amyloidosis: https://pubmed.ncbi.nlm.nih.gov/34517412/
8. Venetoclax in AL amyloidosis (largest retrospective study till date):
https://pubmed.ncbi.nlm.nih.gov/33431806/


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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 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).


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This 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 (http://amyloidaware.com/) .