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Amyloidosis Support Groups

We are a phone call or email away!
TOLL FREE HELP/HOT LINE: 866-404-7539
OR EMAIL: Info@amyloidosissupport.org


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

Upcoming Webinars

TBA

Some of our past, present and future presenters and panelists are:

  • Jo Abraham
  • Katie Agre
  • Kevin Michael Alexander
  • Kelsey Barrell
  • Isidore Berenbaum
  • Monica Fawzy Bryant
  • John Clarke
  • Chakra Chaulagain
  • Hongya Chen
  • Richard Cheng
  • Robert David
  • Angela Dispenzieri
  • Jane Distad
  • Anita D'Souza
  • Jessica Edwards
  • Morie Gertz
  • Martha Grogan
  • Andrea Havasi
  • Michelle Kaku
  • Chafic Karam
  • Tibor Kovacsovics
  • Shaji Kumar
  • Heather Landau
  • Vincent Lau
  • Sarah Lee
  • Suzanne Lentzsch
  • Michaela Liedtke
  • Edward Libby
  • Ahmad Masri
  • Mat Maurer
  • Jennifer McMahon
  • Eva Medvedova
  • Celestial Miller
  • Deirdre Mooney
  • Orly Moshe-Lilie
  • Jose Nativi
  • Nico Cheek- O'Donnell
  • Agne Paner
  • Jignesh Patel
  • Maria Picken
  • Cara Rosenbaum
  • Rick Ruberg
  • Vaishali Sanchorawala
  • Dr. Nitasha Sarswat
  • Farooq Sheik
  • Taimur Sher
  • Brett Sperry
  • Barry Trachtenberg
  • Jason Valent
  • Robert Vescio
  • Jonathan Wall
  • Ronald M. Witteles
  • David Wolinsky
  • Jeffrey Zonder
  • ----------------------------------

    Previous Webinars

    Northeast ATTR Webinar, July 10, 2021

    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


    Pacific Northwest AL Webinar, April 24, 2021


    Coping with Amyloidosis Webinar, April 17, 2021


    Pacific Northwest ATTR Virtual Support Group Webinar, March 13, 2021

    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


    AL Amyloidosis Support Group Webinar, February 20, 2021

    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*

    *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

    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

    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

    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


    AL Light Chain Amyloidosis Support Group Meeting, April 18, 2020

    Apr 18 2020 AL Webinar Playlist

    Presentations



    Support Groups

    2020 CALENDAR



    WEBINARS (Virtual Meetings)



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    We invite our pharmaceutical liaisons to our support group meetings to help in our goal of educating and empowering our patients. The donations and/or grant received from these companies are unconditional, and the ASG does not endorse any one of their products over any other types of amyloidosis treatment. These treatments are mentioned at our meetings, on our website, and other electronic format for educational purposes. We encourage you to consult your amyloidosis professional when choosing a treatment plan.



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