Presented by the Amyloidosis Speakers Bureau ... Learn about wild-type amyloidosis from both an expert clinician and his patient. Listen to world-renowned cardiologist Dr. Mathew S. Maurer of New York-Presbyterian Hospital / Columbia University Medical Center overview wild-type amyloidosis (ATTRwt), followed by one of his patients John Basdavanos as he shares his journey with wild-type amyloidosis.
(Based on highlights from a presentation to the Northeast Ohio Medical University College of Medicine.)

Recording of the Amyloidosis Support Groups webinar on Cardiac Amyloidosis in AL (light chain) and ATTR (transthyretin) Amyloidosis from January 20, 2024. This webinar recording has been edited for content and time.

Moderator:
Muriel Finkel, President, Amyloidosis Support Groups

Speakers:
Melissa Lyle, MD, FACC, Assistant Professor of Medicine, Cardiology Lead, Multidisciplinary Amyloid Clinic, Mayo Clinic, Jacksonville, FL
Justin Grodin, MD, MPH, FACC, Associate Professor of Medicine, Medical Director, Internal Medicine Clinical Trials Unit, University of Texas Southwestern Medical Center, Dallas, Texas
Barry Trachtenberg, MD, FACC, Advanced Heart Failure Cardiology, Houston Cardiovascular Associates, J.C. Walter Transplant Center at Houston Methodist Hospital, Houston, TX
Paula Schmitt, Executive Director, Amyloidosis Support Groups
*Gustavo Buchele, MD, PhD, Senior Director, Clinical Development, Alexion Pharmaceuticals, Boston, MA
*Mark McGovern, RN, CCRN, Vice President Clinical Operations, Eidos Therapeutics, a subsidiary of BridgeBio Pharma, San Francisco, CA
*Joy Olbertz, PharmD, PhD, Senior Director, Clinical Scientist, Intellia Therapeutics, Inc., Cambridge, MA

Chapters
0:00 Welcome
2:53 Speaker Introductions
3:52 ATTR and AL Treatment Charts
4:34 Melissa Lyle: Cardiac Amyloidosis: Heart Failure Symptoms and Treatment
32:23 Justin Grodin: Arrhythmias, Pacemakers, & Defibrillators in Cardiac Amyloidosis
1:00:05 Barry Trachtenberg: Advanced Heart Failure Therapies in Cardiac Amyloidosis
1:32:27 Panel Discussion/Q&A
1:57:54 Paula Schmitt: Financial Assistance
2:07:39 Panel Discussion/Q&A cont’d
2:11:13 Pharma Trial Information
2:11:43 Panel Comments on Pharmaceutical Trials

*Live webinar only. Presentations and commentary from these speakers were authorized for the live webinar only and are excluded from this video recording.

Sixteenth edition of our series of educational webinars for healthcare professionals on all different thematic areas within ERN GUARD-Heart. Each month, there will be a live webinar, where two cases will be discussed by the presenting expert and thereafter all participants will be encouraged to ask questions and to discuss the cases. Each webinar will cover one specific thematic area.

Title: Cardiac amyloidosis: from diagnosis to management

| Systemic amyloidosis MOD

A few excerpts from a 3-minute MOD animation that provides an insightful overview of amyloidosis, a group of rare and devastating progressive diseases caused by the accumulation of misfolded proteins.

The most common form of systemic amyloidosis is amyloid light chain (AL) amyloidosis, which is caused by the misfolding of immunoglobulin light chains produced by abnormal plasma cells in the bone marrow. These misfolded light chains aggregate, forming amyloid fibrils that accumulate in organs and tissues, leading to damage and dysfunction.

A crucial detail and task for us was to create an accurate depiction of the immunoglobulin light chain monomer, its conformational misfolding – and ultimately, its aggregation and assembly into amyloid fibrils – which accumulate into deposits and damage organs.

Given the significant impact on the heart (may lead to conditions such as cardiomyopathy in over 75% of patients), the focus of this animation is on illustrating the damage caused by amyloid deposits in cardiac tissue. While the heart is most commonly affected, amyloid fibrils can also accumulate in other organs such as the liver, wrists, hands, feet, tongue, and gastrointestinal tract.

By illustrating these key processes, this animation highlights the severe impact of amyloid deposits on the heart and other organs affected by AL amyloidosis.

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Early diagnosis can make all the difference for multiple myeloma and AL amyloidosis patients, but delays are common. In this webinar, Dr. Nadine Abdallah will share findings from her HealthTree research, “AL Amyloidosis: Understanding the Clinical Prodrome and Delays in Diagnosis.” She’ll discuss how the study was conducted, key results, and why they matter to patients. Learn how you can help improve future research by participating in studies and surveys. A Patient Navigator, from HealthTree, will be available at the end of the webinar to answer any questions you have about HealthTree Cure Hub and how you can power lifesaving research. Don’t miss this important discussion!

Cerebral Amyloid Angiopathy (CAA) Webinar recorded on Saturday November 23, 2024

Hosted by Amyloidosis Support Groups (ASG) and the International CAA Association
Moderated by Muriel Finkel, President, Amyloidosis Support Groups (ASG)

Chapters
0:00 Welcome and Introduction: Muriel Finkel, Drs. Eric Smith and Susanne van Veluw
4:36 General Overview of CAA, Dr. Steven M. Greenberg
22:13 Recap of the 9th International CAA Association Conference, Dr. Gargi Banerjee
38:09 Ongoing Studies in CAA, Dr. Mariel Kozberg
54:00 Question and Answer Session: All Panelists

Panelists
Steven M. Greenberg, MD, PhD
International CAA Association – Past Chair
Professor of Neurology
John J. Conway Endowed Chair in Neurology
Harvard Medical School, Massachusetts General Hospital, Boston, MA, US

Eric Smith, MD, MPH, FRCPC, FAHA
International CAA Association – Chair
Professor of Neurology
Katthy Taylor Chair in Vascular Dementia
Cumming School of Medicine, University of Calgary, Calgary, Alberta, CA

Mariel G. Kozberg, MD, PhD
Vascular Neurologist
Assistant Professor of Neurology
Harvard Medical School, Massachusetts General Hospital, Boston, MA, US

Gargi Banerjee, MD, PhD
International CAA Association – Board Member
Clinical Lecturer
University College London, National Hospital for Neurology and Neurosurgery, London, UK

Susanne J. van Veluw, PhD
International CAA Association – Co-Chair
Associate Professor of Neurology
Harvard Medical School, Massachusetts General Hospital, Boston, MA, US

More information about CAA is available at CAAForum.com
This webinar recording has been slightly edited for content and time.