Amyloidosis Support Groups Virtual Meetings
Amyloidosis Support Groups is hosting "virtual"ťsupport group meetings during the coronavirus pandemic through a series of webinars. Although we cannot meet in person until it is safe, we are maintaining our support group meetings through these online webinars that all patients and caregivers can attend. You can register for upcoming webinars as well as view the excellent presentations from our previous webinars through the links on this page.
You can view all of our previous webinars on the Amyloidosis Support Groups YouTube channel here: https://www.youtube.com/c/AmyloidosisSupportGroups
----------------------------------
Previous Webinars
----------------------------------
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.
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
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
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
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
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
ATTR Treatments Amyloidosis Support Group Webinar, December 5, 2020
Dec 5th 2020 AL Webinar Playlist
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.
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
AL Amyloidosis Support Group Virtual Meeting, September 26, 2020
Sep 26 2020 AL Webinar Playlist
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
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
hATTR and ATTRwt Amyloidosis Support Group Meeting, August 15, 2020
Aug 15 2020 Webinar Playlist
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
AL Light Chain Amyloidosis Support Group Meeting, June 13, 2020
June 13 2020 AL Webinar Playlist
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
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
ATTR Amyloidosis Support Group Meeting, April 25, 2020
Apr 25 2020 ATTR Webinar Playlist
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
AL Light Chain Amyloidosis Support Group Meeting, April 18, 2020
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
Some of our past, present and future presenters and panelists are:
|
