Triage Health
Website: https://triagecancer.org
Medicare Comparison Worksheet: https://triagecancer.org/worksheet-medicare
Finances Toolkit: https://cancerfinances.org
General info on Medicare: https://triagecancer.org/quick-guides#qg-medicare
https://triagecancer.org/gethelp

2024 Financial Assistance flyer (PDF)

Foundation Assistance
https://www.panfoundation.org
https://www.tafcares.org
https://www.healthwellfoundation.org
NORD - https://rarediseases.org/patient-assistance-programs/financial-assistance/

Pharma websites for Assistance and Information

Alnylam
https://www.AlnylamAssist.com
Amvuttra Start Form - https://www.amvuttrahcp.com

Pfizer
https://www.vyndalink.com 1-888-222-8475 8 am -8 pm
Vyndamax In Canada https://www.pfizer.ca/en/our-products/assistance-programs

AstraZeneca
https://www.myaccess360.com/patient/wainua-eplontersen.html

Johnson & Johnson
https://www.darzalex.com/patient-and-care-partner-support
https://www.JJPAF.org

Recording of the Amyloidosis Amyloidosis Support Groups webinar on ATTR amyloidosis recorded on March 9, 2024.

Moderator: Muriel Finkel, President, Amyloidosis Support Groups

Speakers:

Tony Urey, MD, Cardiologist, Assistant Professor of Medicine, UC San Diego School of Medicine, La Jolla, CA
Chafic Karam, MD, Neurologist, Associate Professor of Neurology, University of Pennsylvania, Philadelphia, PA
Jonathan Wall, PhD, Professor, University of Tennessee Graduate School of Medicine, Knoxville, TN
Paula Schmitt, Executive Director, Amyloidosis Support Groups
*Gabriela Tamariz, MD, Medical Science Liaison, Alnylam Pharmaceuticals, Cambridge, MA
*Adam Castaño, MD, MS, Vice President, Global Clinical Development, ATTR Amyloidosis, BridgeBio Pharma, New York, NY
*Hannah Pope, PharmD, MHA, Sr. Medical Science Liaison, BridgeBio Pharma, St. Louis, MO
*Liron Walsh, MD, Head of Development, In Vivo Programs, Intellia Therapeutics, Inc., Cambridge, MA
*Sidsel Høier Gamborg Møller, MD, PhD, Global Medical Manager, Novo Nordisk, Copenhagen, Denmark
*Alyssa A. Hawranko, PhD, Executive Medical Science Liaison, ATTR – Amyloidosis, US Medical Affairs, AstraZeneca, LP
*Cristina Quarta, MD, PhD, Senior Medical Director, Alexion, AstraZeneca Rare Disease, Boston, MA
*Lori Baylor, PhD, Medical Director – Rare Cardiology, US Medical Affairs, Rare Disease, Pfizer Inc., Boston, MA

* Please note that the presentations from pharmaceutical representatives, plus certain Q&A participation, have been excluded from this recording because they were only authorized for use during the live webinar and have not been authorized for post-webinar publication and distribution

Chapters:
0:00 Welcome and Speaker Introductions
3:09 ATTR Treatment Chart
3:30 Dr. Tony Urey, Current FDA Approved Treatments for ATTR Amyloidosis
21:31 Dr. Chafic Karam, hATTR Polyneuropathy Treatments
42:15 Dr. Tony Urey, Drugs in Clinical Trials (silencers)
59:00 Q&A with Drs. Urey, Karam
1:17:46 Paula Schmitt, Financial Assistance Update
1:26:11 Dr. Tony Urey, Investigational and Anti-fibril Therapies
1:38:17 Q&A 2 with Drs. Urey, Karam
1:44:47 Dr. Jon Wall, Diagnosing Cardiac Amyloid using 99mTc-p5+14 SPECT/CT Imaging
1:59:50 Muriel Finkel & Dr. Urey on BridgeBio ACT-Early trial, use of Tafamidis in BridgeBio ATTRibute-CM study
2:01:44 Muriel Finkel questioning whether pacemakers exclude participants from enrolling in ATTR trials (answer: they usually don't)

This webinar video has been edited for content and time.

Recording of the Amyloidosis Support Groups webinar on Light Chain (AL) Amyloidosis on February 24, 2024. This webinar recording has been edited for content and time.

Moderator: Muriel Finkel, President, Amyloidosis Support Groups

Speakers:

Angela Dispenzieri, MD, Chair, Division of Hematology, Mayo Clinic, Rochester, MN
Suzanne Lentzsch, MD, PhD, Director, Multiple Myeloma and Amyloidosis Service, Professor of Clinical Medicine, Columbia University Medical Center, New York, NY
*John Sekab, PharmD, Global Medical Director, Amyloidosis, Alexion, AstraZeneca Rare Disease, Boston, MA
*Spencer Guthrie, Cofounder & Chief Operating Officer, Attralus, Inc., South San Francisco, CA
*Ingrid Sprinz, PhD, Sr. Medical Director, Hematology, Prothena Biosciences, Brisbane, CA
*Chetasi Talati, MD, Medical Director, Multiple Myeloma and Amyloidosis Clinical Development, AbbVie, North Chicago, IL
Jonathan Wall, PhD, Program Director, Amyloidosis and Cancer Theranostics Program, and Professor, Tennessee Graduate School of Medicine, Knoxville, TN
Paula Schmitt, Executive Director, Amyloidosis Support Groups

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

Chapters:
0:00 Welcome and Speaker Introductions
2:47 AL Amyloidosis Treatment Chart
4:31 Lentzsch: Bispecific Antibodies and Beyond in AL Amyloidosis
23:00 Q&A with Lentzsch and Dispenzieri
50:02 Wall: Diagnosing Cardiac Amyloid Using 99mc-p5+14 SPECT/CT Imaging
1:06:00 Schmitt: Financial Assistance
1:15:54 Q&A with Dispenzieri and Wall
1:25:28 Dispenzieri: AL amyloidosis treatment: focusing on venetoclax, ASCT, and IMiDs
1:47:47 Final Q&A with Dispenzieri, Schmitt, Wall

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.

Moderater: Muriel Finkel, President, Amyloidosis Support Groups

Featured Speakers:
Melissa Lyle, MD, Cardiologist, Assistant Professor of Medicine, Division of Advanced Heart Failure and Transplantation, Mayo Clinic, Jacksonville, FL
Richard Cheng, MD, Section Head, HF, MCS, HTx, Cardio-oncology, University of Washington, Seattle, WA
Chafic Karam, MD, Neurologist, Associate Professor of Neurology, University of Pennsylvania, Philadelphia, PA
Paula Schmitt, Executive Director, Amyloidosis Support Groups
*Spencer Guthrie, Cofounder and COO, Attralus
*Joy Olbertz, PharmD, PhD, Senior Director, Clinical Scientist, Intellia
*Harris Weisz, PhD, Medical Science Liaison, Alnylam
*Kristina Kipp, PharmD, Senior Medical Science Liaison, AstraZeneca

* Please note that the presentations from pharmaceutical representatives, plus certain Q&A participation, have been excluded from this recording because they were only authorized for the live webinar and have not been authorized for post-webinar publication and distribution

---

Chapters
0:00 Welcome and Speaker Introductions
3:12 ATTR Treatment Chart
3:48 Dr. Melissa Lyle, ATTR Amyloidosis: Current and Emerging Therapies
31:47 Dr. Richard Cheng, Management of Heart Failure in ATTR Cardiomyopathy
56:24 Dr. Chafic Karam, Neurological Complications of ATTR Amyloidosis
1:16:43 Paula Schmitt, Financial Assistance Update
1:23:51 Q&A with Drs. Lyle, Cheng, Karam
2:05:44 Q&A discussion: Attralus trials, diflunisal use

This webinar video has been edited for content and time.

Moderater: Muriel Finkel, President, Amyloidosis Support Groups

Participants:
Mathew S. Maurer, MD, Cardiologist, Director, Cardiac Amyloidosis Center, Professor of Medicine, Columbia University Medical Center
Chafic Karam, MD, Neurologist, Associate Professor of Neurology, University of Pennsylvania
*Joy Olbertz, PharmD, PhD, Senior Director, Clinical Scientist, Intellia Therapeutics
*Anne Ersbøll MD, PhD, Senior Global Medical Manager, Global Medical Affairs, Cardiovascular Diseases, Novo Nordisk
*Gustavo Buchele, MD, PhD, Executive Director, Clinical Development, Ionis Pharmaceuticals
Craig Spolsky, Advocacy & Professional Relations Director, Pfizer, Inc.
*Steven Roblin, PhD, US Medical Director, Alnylam Pharmaceuticals
Jocelyn Ashford, Vice President, Patient Advocacy, BridgeBio Pharma
Paula Schmitt, Executive Director, Amyloidosis Support Groups

*Presentations and discussions by these participants were only authorized for use during the live webinar, not for publication on YouTube. Their contributions have been removed from this video.

---

Chapters
0:00 Welcome and Introduction of Participants
3:24 ATTR Treatment Chart
3:52 Dr. Mat Maurer, Systemic Amyloidosis
27:14 Dr. Chafic Karam, Neurological Complications of ATTR Amyloidosis
56:55 Q&A Session One
1:36:24 Muriel Finkel, Info on the 2023 ASG ATTR Patient Conference this October
1:38:17 Paula Schmitt, Patient Support and Financial Assistance
1:48:25 Jocelyn Ashford, BridgeBio Update
1:50:44 Craig Spolsky, Update on Pfizer Patient Affairs Liaisons for ATTR
1:56:36 Q&A Session Two

Presenters and Panelists
Muriel Finkel, President, Amyloidosis Support Groups
Morie Gertz, MD, Hematologist,
Roland Seidler Jr. Professor, College of Medicine, Mayo Clinic, Rochester, MN
Anita D’Souza, MD, Hematologist/Oncologist, Associate Professor, Medical College of Wisconsin, Milwaukee, WI
Nelson Leung, MD, Nephrologist, Professor of Medicine, Mayo Clinic, Rochester, MN
Ashish Verma, MB, BS, FASN, Nephrologist, Assistant Professor of Medicine, Renal Section, BU School of Medicine, Boston, MA
Tony Urey, MD, Cardiologist, Assistant Professor of Medicine, UC San Diego School of Medicine, La Jolla, CA
Cara Rosenbaum, MD, Hematologist/Oncologist, Assistant Professor of Medicine, Weill Cornell Medical College, Cornell University, New York NY
Monica Fawzy Bryant, Esq, Health Care Rights Attorney, Co-founder and COO, Triage Cancer, Chicago, IL
Rajshekhar Chakraborty, MD, Assistant Professor of Medicine, Columbia University Medical Center, Multiple Myeloma and Amyloidosis Service, New York, NY
Spencer Guthrie, Cofounder & Chief Operating Officer, Attralus, Inc.
Ansgar Conrad, PhD, VP, Medical Affairs & Patient Advocacy, Prothena Biosciences, Inc.
Julia Catini, PharmD, Senior Medical Director, Amyloidosis, Alexion, Astra Zeneca Rare Disease

---

Chapters

0:00 Welcome and Speaker Introductions by webinar moderator Muriel Finkel
4:54 Managing AL Treatment Side Effects, Dr. Morie Gertz
29:48 IMiDS, Alkylators, Anti-Fibril Drugs, Dr. Anita D'Souza
44:22 Q&A Discussion Panel with Drs. Gertz, D'Souza, Rosenbaum, Chakraborty
1:04:53 Renal Replacement Theory for Renal Amyloidosis, Dr. Nelson Leung
1:32:09 AL Amyloidosis and the Heart, Dr. Tony Urey
1:58:47 Q&A with Drs. Leung, Urey
2:01:40 Health Insurance, Monica Fawzy Bryant, Triage Cancer
2:21:44 Phase 1/2 Trial of Venetoclax, Dr. Rajshekhar Chakraborty
2:26:58 Attralus Update on amyloid fibril targeting for removal, Spencer Guthrie

*Birtamimab and the AFFIRM-AL Study, Ansgar Conrad
*Alexion AstraZeneca Rare Disease work in Amyloidosis, Julia Catini

This webinar video has been edited for content and time.
*Note: Presentations marked with an asterisk were delivered live on the webinar but are not authorized for publication on YouTube.

Amyloidosis Support Groups webinar on ATTR amyloidosis from July 23, 2022. Led by ASG President Muriel Finkel, featured speakers include:

Frederick Ruberg, MD, Associate Chief, Cardiovascular Medicine, BU Medical Center, Boston, MA
Jignesh K. Patel, MD, PhD, Cedars-Sinai California Heart Center, Beverly Hills, CA
Chafic Karam, MD, Neurologist, Associate Professor of Neurology, University of Pennsylvania, Philadelphia, PA
Michael Maitland, MD, PhD, Sr. Director, Clinical Development, Intellia Therapeutics
Colleen Moffitt, PharmD, MS, US ATTR Medical Director, Alnylam Pharmaceuticals
Gustavo Buchele, MD, PhD, Executive Director, Clinical Development, Ionis Pharmaceuticals
Craig Spolsky, Advocacy & Professional Relations Director, Pfizer, Inc.
Chris Olson, Senior Director, Vyndamax Access & Patient Solutions, Pfizer, Inc.
Jonathan Wall, PhD, Professor, University of Tennessee Graduate School of Medicine, Knoxville, TN
Paula Schmitt, Executive Director, Amyloidosis Support Groups

---

Chapters

0:00 Welcome and Speaker Introductions
3:05 ATTR Treatment Chart
3:30 Dr. Rick Ruberg, Update in ATTR Amyloidosis Treatments
39:43 Dr. Jignesh Patel, Non-ATTR Specific Therapies
1:08:50 Q&A Session 1: Cardiology focus with Ruberg, Patel
1:22:37 Dr. Chafic Karam, Neuropathy In Amyloid: Symptoms Management
1:52:10 Q&A Session 2 with Karam, Ruberg, Patel
2:10:55 Dr. Michael Maitland, Intellia, CRISPR/CAS9 Gene Editing for Transthyretin (ATTR) Amyloidosis
2:22:53 Colleen Moffit, Alnylam Update
2:30:12 Dr. Gustavo Buchele, AstraZeneca/Ionis TTRansform Update
2:35:49 Craig Spolsky, Chris Olson, Pfizer Update
2:42:35 Dr. Jonathan Wall, AT-01 Diagnostic Imaging Agent for Systemic Amyloidosis
2:58:44 Q&A Session 3
3:12:52 Paula Schmitt, Financial Assistance Update

Moderator: Muriel Finkel, President, Amyloidosis Support Groups

Presenters and Panelists

Paula Schmitt, Executive Director, Amyloidosis Support Groups
Mathew S. Maurer, MD, Cardiologist, Director, Cardiac Amyloidosis Center, Professor of Medicine, Columbia University Medical Center
Nitasha Sarswat, MD, Director of Infiltrative Cardiomyopathy Program, University of Chicago Medicine
Lynn Punnoose, MD, Director, Vanderbilt Advanced Heart Failure/Transplant Fellowship Program, Vanderbilt University Medical Center
Sami Khella, MD, Chief of Neurology, Penn Presbyterian Medical Center
Michael Maitland, MD, PhD, Sr. Director, Clinical Development, Intellia Therapeutics
*Colleen Moffitt, PharmD, MS, US ATTR Medical Director, Alnylam Pharmaceuticals
Gustavo Buchele, MD, PhD, Executive Director, Clinical Development, Ionis Pharmaceuticals
*Abbas Ebrahim, MD, Sr. Medical Director, US Medical Affairs, Rare Disease, Pfizer
*Lori Baylor, PhD, Medical Director, Rare Cardiology, US Medical Affairs, Rare Disease, Pfizer
Spencer Guthrie, Cofounder & Chief Operating Officer, Attralus, Inc., South San Francisco, CA

*Presentations made by Alnylam and Pfizer during the webinar are not yet authorized for publication on YouTube.
When and if authorized, ASG will make those presentations available on the YouTube channel.

---

Chapters

0:00 Introduction of Speakers
2:50 ATTR Treatment Chart
3:34 Webinar attendee poll on Sleep Apnea
5:15 Dr. Mat Maurer, Overview of ATTR and Cardiomyopathy
20:10 Q&A Session 1
36:10 Dr. Sami Khella, Neuropathy and ATTR
55:29 ASG information request on home infusions through Medicare
56:29 Q&A Session 2
1:19:36 Paula Schmitt, Financial Assistance
1:27:13 Dr. Sami Khella on Carpal Tunnel
1:30:23 Dr. Michael Maitland, Update on Intellia's CRISPR/Cas9 Genome Editing for ATTR
1:41:56 Dr. Gustavo Buchele, Update on Ionis's TTRansform Program (Eplontersen)
1:50:28 Spencer Guthrie, Update on Attralus's amyloidosis imaging and therapeutic agents
2:03:05 Q&A Session 3

A detailed overview plus answers to questions on health insurance considerations for patients with amyloidosis.

Presenter

Monica Fawzy Bryant, co-founder and COO, Triage Cancer

Webinar Panelists

Muriel Finkel, President, Amyloidosis Support Groups
Paula Schmitt, Executive Director, Amyloidosis Support Groups

Presentations

Welcome and Panelist Introductions, Muriel Finkel, ASG President
Transthyretin Cardiac Amyloidosis (ATTR-CM) Signs, Symptoms, and Diagnostic Approach, Farooq Sheikh, MD, FACC
Treatment for ATTR Cardiac Amyloid, John Berk, MD
Symptom Mangement in Cardiac Amyloidosis: Back to Basics, Frederick L. Ruberg, MD
Alnylam Clinical Trial Update, Gabriela Tamariz, MD
Eidos Clinical Trial Update, Makenna Paule
Ionis Clinical Trial Update, Gustavo Buchele, MD, PhD
Question and Answer Session 1, Panelists
Peripheral Neuropathy Symptoms, Diagnostic Tests, and Approved Treatments, Thomas Brannagan, MD
Symptom Management in Amyloid Neuropathy, Chafic Karam, MD
Alnylam Update on Clinical Trial for Hereditary TTR, Gabriela Tamariz, MD
Ionis Update on Clinical Trial for Hereditary TTR, Gustavo Buchele, MD, PhD
Intellia CRISPR CAS9 Update, Jeff Cehelsky, BS Pharm, MBA
Question and Answer Session 2, Panelists
Financial Assistance, Paula Schmitt, ASG Executive Director

Amyloidosis Support Group meeting via webinar for AL patients in the Pacific Northwest region of the US. Participating panelists include hematologists Edward Libby, MD, and Sarah Lee, MD, from the University of Washington in Seattle, and Eva Medvedova, MD from Oregon Health & Science University (OHSU) in Portland, cardiologists Ahmad Masri, MD, also at OHSU, and Richard Cheng, MD, from the University of Washington. Also participating from the University or Washington is nephrologist Bilal Malik, MD. Johnathan Wall, PhD, professor at the University of Tennessee's Graduate School of Medicine in Knoxville provides another update on his amyloidosis imaging studies.

---

Discussion Topics

0:00 Welcome and Introduction of Panelists
4:41 Drug Treatment Chart
5:17 Dara-CyBorD
11:12 Alkylators
15:33 Proteasome Inhibitors
18:36 Side Effects
26:26 Dexamethasone
37:13 IVIG (immunoglobulin)
40:50 Anti-plasma Antibodies
47:18 IMiDs (Revlimid, Thalomid)
57:41 Multiple myeloma/AL amyloidosis Overlap
1:08:00 Fibril Antibodies (CAEL-101, NEO-D)
1:15:57 Stem Cell Transplant
1:21:17 Amyloidosis Imaging - Dr. Jonathan Wall
1:50:17 Questions and Answers

The Amyloidosis Support Group webinar on April 17, 2021, focused on the mental health aspects of coping with this life-altering disease. Muriel Finkel, ASG President, led the webinar and Q&A session. Expert panelists included Dr. Isidore Berenbaum, Director of the Consultation-Liaison Psychiatry Fellowship Program at Boston Medical Center (BMC), Dr. Jennifer McMahon, Consultation Liaison Psychiatry Fellow at BMC, Robert David, Manager of Cancer and Sickle Cell Support Programs at BMC, Nico Cheek O'Donnell, Clinical Social Worker at the Utah Amyloidosis Program, Huntsman Cancer Institute in Salt Lake City, and Dr. Taimur Sher, Director of the Multispecialty Amyloidosis Clinic at the Mayo Clinic in Jacksonville, Florida. Jessica Edwards, Director of External Relations, Strategic Alliances & Development for the National Alliance on Mental Illness (NAMI) in Arlington, VA, contributed a pre-recorded video on resources and support available through NAMI.

---

Presentations

0:00 Welcome and Opening Comments, Muriel Finkel, ASG President
3:11 Panel Introduction
4:45 Dr. Isidore Berenbaum
13:07 Dr. Jennifer McMahon
20:06 Bob David
29:57 Nico Cheek-O�Donnell
34:04 Dr. Taimur Sher
39:00 Question and Answer Session with Panelists
1:34:08 Jessica Edwards, NAMI

Panelists

Muriel Finkel, ASG President
Ahmad Masri, MD, MS, Cardiology, Director of the Hypertrophic Cardiomyopathy Center at Oregon Health & Science University, Portland, OR
Deirdre Mooney, MD, MPH, FACC, Cardiologist at Sacred Heart Medical Center, Providence Health & Services, Spokane, WA
Richard Cheng, MD, MSc, Cardiologist/Cardio-oncologist, Assistant Professor of Cardiology, University of Washington, Seattle, WA
B. Jane Distad, MD, Director, EMG and Associate Professor, Department of Neurology, University of Washington, Seattle, WA
Orly Moshe-Lilie, MD, Neurologist, Neuromuscular Fellow at Oregon Health & Science University, Portland, OR
Edward N. Libby, MD, Hematology/Oncology, Associate Professor, Medical Oncology, University of Washington, Seattle, WA
Hongya Chen, PharmD, Cardiology, Oregon Health & Science University, Portland, OR

---

Presentations

Introduction and Speaker Bios, Muriel Finkel, President, Amyloidosis Support Groups
Agenda, Dr. Ahmad Masri
ATTR in the Heart, Dr. Deirdre Mooney
Treatment for ATTR Cardiomyopathy, Dr. Richard Cheng
Amyloid Transthyretin (ATTR) Amyloidosis in the Nerves, Dr. Jane Distad
Amyloidosis � Why Did I Have to Get All of Those Tests? Dr. Edward Libby
ATTR Treatment: Navigating Through the Complexity of the Healthcare System, Dr. Hongya Chen
What do All These Neurological Tests Mean? Dr. Orly Moshe-Lilie
Transthyretin Amyloidosis: Advances and New Therapies, Dr. Ahmad Masri
Question and Answer Session, Panelists
Wrap Up and Final Thoughts, Panelists

Presenters and Panelists

Muriel Finkel, President, Amyloidosis Support Groups
Morie Gertz, MD, Hematologist, Roland Seidler Jr. Professor, College of Medicine, Mayo Clinic, Rochester, MN
Anita D'Souza, MD, Hematologist, Associate Professor, Medical College of Wisconsin, Milwaukee, WI
Andrea Havasi, MD, Nephrologist, Assistant Professor of Medicine, Boston University School of Medicine, Boston, MA
Chafic Karam, MD, Neurolgist, Associate Professor of Neurology, University of Pennsylvania, Philadelphia, PA
Michaela Liedtke, MD, Hematologist, Associate Professor of Medicine (Hematology), Stanford University Medical Center, Stanford CA
Mathew S. Maurer, MD, Cardiologist, Director, Cardiac Amyloidosis Center, Professor of Medicine, Columbia University, New York, NY
Agne Paner, MD, Hematologist, Associate Professor, Rush Medical College, Chicago, IL
Mike Royal, M.D., Chief Medical Officer, Sorrento Therapeutics, Inc., San Diego, CA
Paula Schmitt, Executive Director, Amyloidosis Support Groups
Jonathan Wall, PhD, Professor, University of Tennessee Graduate School of Medicine, Knoxville, TN
Jeffrey Zonder, MD, Hematologist, Karmanos Cancer Institute, Professor of Medicine, Departments of Hematology and Oncology, Wayne State University, Detroit, MI

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Discussions and Presentations

Introduction & Discussion: Andromeda Drug Trial (daratumumab) and Related Topics, Muriel Finkel, Dr. Morie Gertz, and Panelists
Q&A Session 1: Patient Questions about AL Amyloidosis, Panelists
Financial Assistance 02/20/2021 Update, Paula Schmitt, ASG Executive Director
Imaging AL Light Chain Amyloidosis: 02/20/2021 Update, Jonathan Wall, PhD
Sorrento STI-6129 ADC Initial Human Study Update, Dr. Mike Royal
Q&A Session 2: More Answers to Patient Questions about AL Amyloidosis, Panelists

Speakers and Panelists

Brett Sperry, MD, St. Luke's Mid America Heart Institute and Assistant Professor of Medicine, University of Missouri, Kansas City, MO
Akshay Vaishnaw, MD, PhD, President, Research and Development, Alnylam Pharmaceuticals, Cambridge, MA
Steven Roblin, PhD, Medical Director, US TTR Lead, Alnylam Pharmaceuticals, Cambridge, MA
Gustavo Buchele, MD, PhD, Medical Director, Ionis Pharmaceutical, Inc., Carlsbad, CA
Adam Castano, MD, MS, Senior Medical Director, ATTR Cardiac Amyloidosis, Pfizer Inc., New York, NY
Alan Cohen, MD, Vice President, Global Medical Affairs, Eidos Therapeutics, Inc., San Francisco, CA
Michael Roberts, PhD, Chief Executive Officer, Corino Therapeutics, Inc., Charlotte, NC
Jeffrey Cehelsky, BS Pharm, MBA, Vice President of Development Operations, Intellia Therapeutics, Cambridge, MA
Jocelyn Ashford, Head of Global Patient Advocacy, Eidos Therapeutics, Inc., San Francisco, CA
Jonathan Wall, PhD, Professor, University of Tennessee Graduate School of Medicine, Knoxville, TN
Chafic Karam, MD, Associate Professor of Neurology, University of Pennsylvania, Philadelphia, PA
Nitasha Sarswat, MD, Director of Infiltrative Cardiomyopathy Program, University of Chicago, Chicago, IL

---

Presentations*

• Introduction, Agenda plus Overview of TTR Amyloidosis - Muriel Finkel, President, ASG and Brett Sperry, MD
• Ionis' Tegsedi Update plus Q&A on TTR Silencers - Gustavo Buchele, MD and Panelists
• Pfizer's Vyndaqel and Vyndamax (tafamidis) - Adam Castano, MD
• Corino's CRX-1008 - Michael Roberts, PhD
• Q&A on TTR Stabilizers and Silencers - Panelists
• ASG Update: Financial Assistance, oneAMYLOIDOSISvoice, Patient Registry - Paula Schmitt, ASG Executive Director
• Intellia's CRISPR ATTR Treatment - Jeffrey Cehelsky, VP of Development Operations
• ATTR Amyloid Imaging - Jonathan Wall, PhD
• General Q&A Session 1 - Panelists
• Clinical Trials Update* - Pfizer, Corino, Ionis, Intellia
• General Q&A Session 2 - Panelists

*The webinar presentations and clinical trial updates by Alnylam about Onpattro (patisiran) and by Eidos about Acoramidis (AG10) are unavailable as they are not authorized for post-webinar distribution.

Panelists

Chafic Karam, MD, Associate Professor of Neurology, University of Pennsylvania
Suzanne Lentzsch, MD, PhD, Director, Multiple Myeloma and Amyloidosis Program and Professor of Clinical Medicine, Columbia University Medical Center
Maria M. Picken, MD, PhD, Professor, Loyola University Medical Center, Chicago, IL
Robert Vescio, MD, Director, Multiple Myeloma and Amyloidosis Program, Cedars-Sinai Medical Center
Ron Witteles, MD, Co-Director, Stanford Amyloid Center, The Stanford University Medical Center
Jeffrey Zonder, MD, Professor of Medicine, Departments of Hematology and Oncology, Wayne State University

---

Presentations

• Introduction, Tribute and Participant Bios - Muriel Finkel, ASG President and Paula Schmitt, ASG Executive Director
• AL Amyloidosis Overview - Morie Gertz, MD, Consultant, Dept. of Hematology and Professor, College of Medicine, Mayo Clinic
• Cardiac Amyloidosis - Mat Maurer, MD, Director, Cardiac Amyloidosis Center and Professor of Cardiology, Columbia University Medical Center
• Renal Amyloidosis - Jo Abraham, MD, Associate Professor, Nephrology and Hypertension, Huntsman Cancer Institute, University of Utah
• AL Amyloidosis and the Gut - John Clarke, MD, Director, Esophageal Program, Clinical Associate Professor of Medicine, Stanford University
• CAEL-101 Update - Susan Sobolov, Chief Operating Officer, Caelum Biosciences
• Health Insurance & Finances - Monica Bryant, Esq., Health Care Rights Attorney, Triage Cancer
• ASG Updates on Financial Assistance, oneAMYLOIDOSISvoice, Amyloidosis Patient Registry - Paula Schmitt, ASG Executive Director and Bob Gibson, ASG Special Projects Director
• AL Q&A Session - Speakers and Panelists

Presentations

• Introduction, Memorial Tribute and Participant Bios - Muriel Finkel, President, ASG and Tracey Deutsch, International Liaison, ASG
• Amyloidosis and the Heart - Martha Grogan, MD
• Neurological Complications of ATTR Amyloidosis - Chafic Karam, MD
• Amyloidosis and the Gut - John Clarke, MD
• Health Insurance - Monica Bryant, Esq
• Genetic Counseling for TTR Amyloidosis - Katie Agre, MS, LCGC
• ASG Updates: Financial Assistance, oneAMYLOIDOSISvoice, Patient Registry- Paula Schmitt, ASG Executive Director and Bob Gibson, ASG Special Projects Director
• Q&A Session - Speakers and Panelists

---

Speakers

Martha Grogan, MD, Director, Cardiac Amyloid Clinic, Mayo Clinic, Rochester, MN
Chafic Karam, MD, Professor of Neurology, Oregon Health & Science University
John Clarke, MD, Director, Esophageal Program, Clinical Associate Professor of Medicine, Stanford University
Monica Bryant, Esq., Health Care Rights Attorney, Triage Cancer
Katie Agre, MS, Licensed Certified Genetic Counselor, Department of Cardiovascular Diseases, Mayo Clinic, Rochester, MN

Panelists

Kevin Alexander, MD, Assistant Professor of Medicine, The Stanford University Medical Center
Vincent Lau, MD, Assistant Professor of Neurology, Boston University School of Medicine, Boston, MA
Celestial Miller, MDA,RDN,CSO,CNSC,CD, University of Utah Healthcare, Salt Lake City, UT
Jignesh K. Patel, MD, PhD, Cedars-Sinai California Heart Center, Beverly Hills, CA
Maria M. Picken, MD, PhD, Professor, Loyola University Medical Center, Chicago, IL
Nitasha Sarswat, MD, Director of Infiltrative Cardiomyopathy Program, University of Chicago
Ron Witteles, MD, Co-Director, Stanford Amyloid Center, The Stanford University Medical Center

Presentations

• Introduction to AL Webinar June 13, 2020, Muriel Finkel, President, Amyloidosis Support Groups
• The Treatment of AL Amyloidosis, Angela Dispenzieri, MD, Chair, Division of Hematology, Mayo Clinic, Rochester, MN
• Light Chain Amyloidosis in the Heart, Jose Nativi-Nicolau, MD, Associate Professor of Medicine, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
• Renal Amyloidosis, Andrea Havasi, MD, Amyloidosis Center, Boston University School of Medicine
• Financial Assistance and Amyloidosis Patient Registry Update, Paula Schmitt and Bob Gibson, Amyloidosis Support Groups
• Question and Answer Session, Panelists
• Written Answers to Additional Questions from Patients (PDF), Panelists

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Speakers

Angela Dispenzieri, MD, Chair, Division of Hematology, Mayo Clinic, Rochester, MN
Andrea Havasi, MD, Amyloidosis Center, Boston University School of Medicine
Jose Nativi-Nicolau, MD, Associate Professor of Medicine, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT

Panelists

Jo Abraham, MD, MPH, FASN, Associate Professor, Nephrology & Hypertension, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
Chafic Karam, MD, Professor of Neurology, Oregon Health & Science University
Tibor Kovacsovics, MD, Professor (Clinical), Internal Medicine, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
Celestial Miller, MDA,RDN,CSO,CNSC,CD, University of Utah Healthcare, Salt Lake City, UT
Jignesh K. Patel, MD, PhD, Cedars-Sinai California Heart Center, Beverly Hills, CA
Maria M. Picken, MD, PhD, Professor, Loyola University Medical Center, Chicago, IL
Cara Rosenbaum, MD, Assistant Professor of Medicine, Weill Cornell Medical College, Cornell University, New York NY
David Wolinsky, MD, Director Cardiac Amyloid Clinic, Cleveland Clinic Florida, Weston, FL

Presentations

• ATTR Cardiac Amyloidosis David Wolinsky, MD, Director Cardiac Amyloid Clinic, Cleveland Clinic, Florida
  
• Peripheral and Autonomic Neuropathy Chafic Karam, MD, Professor of Neurology, Oregon Health & Science University
  
• Renal Amyloidosis Andrea Havasi, MD, Amyloidosis Center, Boston University School of Medicine
  
• Imaging Systemic Amyloidosis (ATTR) Johnathan Wall, MD, University of Tennessee Graduate School of Medicine
  
• Questions and Answers, Panelists
  

Apr 18 2020 AL Webinar Playlist

Presentations

• Introduction and Amyloidosis Video Muriel Finkel, President, Amyloidosis Support Groups
• Light Chain (AL) Amyloidosis: Treatment in 2020 and Beyond Heather Landau, MD, Memorial Sloan Kettering Cancer Center
  
• Cardiac Amyloidosis: A Patient’s Perspective Rick Ruberg, MD, Amyloidosis Center, Boston University School of Medicine
  
• CAEL-101 Update Michael Spector, President, Caelum Biosciences
  
• Imaging Systemic Amyloidosis (AL) Johnathan Wall, MD, University of Tennessee Graduate School of Medicine
  
• Advocacy Update Financial Support (Paula Schmitt, ASG), Registry (Bob Gibson, ASG), Amyloidosis Research Consortium (Isabelle Lousada, ARC), Speakers Bureau (Mackenzie Boedicker, Mackenzie’s Mission)
  
• Questions and Answers Panelists