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Dr. Charlie Strange is a Professor of Pulmonary and Critical Care Medicine at the Medical University of South Carolina in Charleston. His interest in Alpha-1 Antitrypsin Deficiency began with participation in the National Heart Lung and Blood Institute Registry in the early 1990s. Today, he manages the Alpha-1 Foundation Research Registry that has enrolled over 3000 individuals with Alpha-1. He directs the Alpha Coded Testing Study that has provided fingerstick blood tests for Alpha-1 testing to greater than 10,000 individuals recording their feelings about testing for a genetic disease. Dr. Strange is the chair of the Medical and Scientific Advisory Board of the Alpha-1 Foundation and a frequent speaker at Alpha-1 support group.
Darrel Kotton is the Co-Director of the Center for Regenerative Medicine at Boston University, and an Associate Professor in the Department of Medicine and in the Department of Pathology and Laboratory Medicine at Boston University School of Medicine. His research focuses on stem cell biology and gene therapy related to lung injury and repair. He specializes in the genetic manipulation of stem cells as well as resident lung cells Projects in his lab currently focus on utilizing novel vectors for the study of alpha-1 antitrypsin deficiency, COPD, Cystic Fibrosis, and lung inflammatory pathways.
For the past 15 years Dr. Stocks has been a faculty member of the University of Texas Health Center at Tyler. His major research focus has been Alpha-1 Antitrypsin Deficiency. He was a principal investigator in the NHLBI registry of patients with severe Alpha-1 Deficiency from 1988-1995. Over the last decade Dr. Stocks has participated as a principal investigator in almost every pharmaceutical trial for Alpha-1 conducted in the United States. He is a member of the Alpha-1 Foundation's Medical and Scientific Advisory Committee with responsibilities for oversight of the Research Registry. He is a past member of the Alpha-1 Association's Board of Directors.
Jeffrey Teckman is a Professor of Pediatrics and Biochemistry and Molecular Biology at the Saint Louis University School of Medicine, Cardinal Glennon Children's Medical Center. His research involves studying the mechanisms by which liver damage occurs in Alpha-1 Antitrypsin Deficiency and how this damage can be treated and prevented. He is also involved in a variety of national and international clinical studies on liver disease. He has written numerous scientific papers on Alpha-1. He also authored a "Question and Answer Book" for families living with liver disease due to Alpha-1. Dr. Teckman is familiar with patients with lung disease through his late wife who suffered from the lung complications of Cystic Fibrosis and received a lung transplant.
Robert “Sandy” Sandhaus graduated from Haverford College in Pennsylvania with a degree in molecular biology. He then received a PhD in cell biology and an MD from the State University of New York at Stony Brook. He completed his residency in internal medicine at the Beth Israel Hospital in Boston and a pulmonary fellowship at the University of California San Francisco (UCSF). He was then appointed to the UCSF medical faculty and subsequently joined the medical faulty at the University of Colorado School of Medicine in 1981 where he founded the Alpha1-Antitrypsin Deficiency Program at National Jewish Medical and Research Center in Denver and remains its director. His research throughout his academic career has centered on the role of white blood cell enzymes in the prevention and promotion of lung disease. This work led to a special clinical interest in patients with the genetic deficiency of alpha-1 antitrypsin. In addition to his ongoing academic career. Dr. Sandhaus briefly left medical practice to work in research and development in the biopharmaceutical industry. He ran clinical development programs at Cortech, NeXstar Pharmaceuticals, and Gilead Sciences. Dr. Sandhaus has served on the Boards of Directors of the Alpha-1 Association, the Alpha-1 Foundation, AlphaNet, and the Osteogenesis Imperfecta Foundation. For the past five years, he has been the Executive Vice President and Medical Director of AlphaNet and the Clinical Director of the Alpha-1 Foundation. He is board certified in internal medicine, pulmonary disease, and critical care medicine. He lives in Bow Mar, Colorado.
Dr. Brantly is Professor of Medicine, Molecular Genetics and Microbiology in the University of Florida’s Division of Pulmonary and Critical Care Medicine. He is also Associate Director of the University of Florida’s Clinical Resource Center. The Alpha-1 Foundation DNA and Tissue Bank is operated under the direction of Dr. Brantly at the University of Florida. He has been extremely active in researching Alpha-1 Antitrypsin Deficiency for over 20 years and has worked with the Alpha-1 Foundation to increase national awareness about the disease and its effects on deficient individuals. Dr. Brantly has been influential in expanding the Florida screening program and has helped coordinate efforts with the Medical University of South Carolina to increase responses to the Alpha-1 Coded Testing Study, a confidential and free testing service encouraging people to screen themselves for early detection. Dr. Brantly has been awarded several honors including the Parker Family Fellowship in Pulmonary Research, the Alpha One Research Professorship, the Alpha-1 National Association Award, and the Visiting Professor Award from the Universita degli Studi di Modena.
Stephen Cassivi received his Doctorate in university of Ottawa. He completed his General Surgery residency at the University of Toronto, Canada and is certified by the Royal College of Physicians and Surgeons of Canada and the American Board of Surgery. He completed a subspecialty fellowship in Cardiothoracic Surgery at Washington University in St. Louis, Missouri and is certified by the American Board of Thoracic Surgery. In 1998, Dr. Cassivi was awarded the 1st Annual C. Walton Lillehei Award for research in Lung Transplantation from the American Association for Thoracic Surgery. In 2004, Dr. Cassivi was named Surgical Director of the Lung Transplantation Program at Mayo Clinic in Rochester, Minnesota.
Mr. Walsh is the co-founder, President and CEO of the Alpha-1 Foundation in Miami, Florida. Under his leadership, the organization has become internationally recognized and has invested more than $28 million to support Alpha-1 research and research-related projects, which includes funding grant awards to more than 50 academic institutions in North America and Europe. Mr. Walsh is also co-founder and President of AlphaNet, Inc. a not-for-profit disease management services company providing comprehensive care exclusively for individuals with Alpha-1 Antitrypsin Deficiency. AlphaNet, Inc. currently provides services to 2,500 individuals with Alpha-1 in all 50 states, Puerto Rico and the Virgin Islands. Due to the infrastructure and support provided by the Foundation and AlphaNet, several companies have drugs in development for the treatment of Alpha-1. In 2002 Mr. Walsh’s contribution to pioneering collaboration in orphan drug development was recognized by the FDA with the Commissioner’s Special Citation. Mr. Walsh has an extensive background in business management and government relations; he served three terms on the Advisory Committee on Blood Safety and Availability (1997-2006), is Immediate-Past Chairperson of the National Health Council’s Board of Directors (2005-2006), he is Past Chair and a member of the American Thoracic Society Public Advisory Roundtable (PAR) and was the Presidential Appointee (2004-2005) of the American Thoracic Society’s Board of Directors. He is a member of the American Lung Association National Action Panel on Lung Disease, is on the Advisory Board of the Center for Genetic Research Ethics And Law (CGREAL) at Case Western Reserve University, is a Trustee on the Foundation of the American Thoracic Society (2006-2008) is a member of the US COPD Coalition Executive Committee, Chair of the International COPD Coalition (2006-2008), and a member of the COPD Foundation Board of Directors. He regularly testifies before Congress and advisory groups as a patient advocate. Mr. Walsh was diagnosed with the rare genetic disorder, Alpha-1 Antitrypsin Deficiency, in 1989.
Oregon Alpha-1 Support Group
Oregon Alpha-1 Support Group Meeting - Oregon City, OR
Toledo Glass City Alphas Support Group
Toledo Glass City Alphas Support Group Meeting - Toledo, OH
Big Red Alphas Support Group
Big Red Alphas Support Group Meeting - Papillion, NE
AlphaBurgherZ Support Group
AlphaBurgherZ Support Group Meeting - Monroeville, PA
Alabama Alpha-1 Support Group
Alabama Alpha-1 Support Group Meeting - Birmingham, AL
San Francisco Bay Area Alpha-1 Support Group
San Francisco Bay Area Alpha-1 Support Group Meeting - Pleasant Hill, CA
Alpha Gators Support Group
Alpha Gators Support Group Meeting - Boynton Beach, FL
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