Amyloidosis Support Groups Virtual Meetings

Upcoming Webinars DATE:December 5th 2020 TOPIC:ATTR – How do the treatments work? DETAILS:If you plan to attend this meeting, please REGISTER HERE.

Amyloidosis Support Groups Webinar on ATTRv & ATTRwt Amyloidosis Please join us on December 5th from 12 pm - 3 pm ET for our next webinar - ATTRv & ATTRwt Amyloidosis Treatments and How They Work. What is the difference between a stabilizer and a silencer? How do they work? Pharma Representatives explain their drugs and answer your questions. Cardiologists and a neurologist will be on hand to answer your questions too. We are asking for you to submit any questions that you may have IN ADVANCE of the webinar by emailing them to info@amyloidosissupport.org. Physician Panelists include Dr. Chafic Karam, University of Pennsylvania, Dr. Nitasha Sarswat, University of Chicago and Dr. Brett Sperry, Saint Lukes Hospital Pharmaceutical Speakers: Akcea/Ionis - Ken Bush, Associate Director, Patient Advocacy and Kristina Bowyer, Vice President, Patient Centric Drug Development Alnylam Pharmaceuticals- Akshay Vaishnaw MD, Ph.D., President of Research and Development and Lori Apple Lawter MPH, Senior Manager, Patient Advocacy and Engagement Corino Therapeutics - Michael Roberts Ph.D., Chief Executive Officer Eidos Therapeutics - Alan Cohen MD, Vice President, Medical Affairs and Jocelyn Ashford, Head of Global Patient Advocacy Intellia Therapeutics - Jeffrey Cehelsky, VP of Development Operations Pfizer - Adam Castaño, MD MS, Senior Medical Director and Craig Spolsky, Patient Advocacy and Professional Relations Director REGISTER HERE

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

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Previous Webinars

AL Amyloidosis Support Group Virtual Meeting, September 26, 2020

• 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

• 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
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

• 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

• 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
  
• Complete ATTR Webinar including All Presentations Amyloidosis Support Groups

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

• 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