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E-Education

E-Education

Watch recordings from our past Educational Events at your leisure anywhere and anytime! Our E-Education has more than 400 presentations that cover important Alpha-1 related topics.

You can also search for more presentations on Vimeo at http://vimeo.com/a1f

This program provides the Alpha-1 Community with access to educational programs from our National Conference and National Education Series.

We gratefully acknowledge all our speakers who volunteered their time and gave permission to record and disseminate their presentations.

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Latest Liver Research in Alpha-1 Antitrypsin Deficiency- CLiC
Event :
Topics : Liver , Research

Ronald Sokol, MD's, Bio:plus

Dr. Sokol is the Director of the Pediatric General Clinical Research Center and Associate Medical Director of the Pediatric Liver Center. He is also a Professor and Vice Chair of Pediatrics at The University of Colorado Health Sciences Center. Dr. Sokol received his MD degree from the University of Chicago School of Medicine. He completed his pediatric training at the University of Colorado Health Sciences Center and subspecialty training at the Children's Hospital Research Foundation of Cincinnati. Dr. Sokol has published extensively on childhood liver disease, nutrition, and oxidative stress. Dr. Sokol received the 2003 Nutrition Award from the American Academy of Pediatrics for his research on vitamin E and antioxidants. Dr. Sokol is the Chair of the Steering Committee of the NIH-supported Biliary Atresia Clinical Research Consortium. He is also the principal investigator for the Cholestatic Liver Disease Consortium (CLiC), which includes the research on Alpha-1. Dr. Sokol also participates in numerous other professional activities, including the Polycystic Kidney Disease Research Group Advisory Board, the Children's Digestive Health and Nutrition Foundation and the American Liver Foundation. Dr. Sokol is the recipient of numerous grant awards and is a reviewer for multiple medical journals. Dr. Sokol is on the Editorial Board of three medical journals and is an Associate Editor of two medical journals. Dr. Sokol was President of the North American Society for Pediatric Gastroenterology and Nutrition in 1996-98. His major interests are in patient care, teaching and research in children's liver disease, nutrition and liver transplantation. 

Latest Research & Clinical Trials

Charlie Strange, MD's, Bio:plus

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.

Alpha-1 Foundation & Research Update
Speaker : Walsh, , John

John Walsh's, Bio:plus

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.

Importance of The Alpha-1 Foundation Research Registry
Event :

Charlie Strange, MD's, Bio:plus

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.

Alpha-1 Foundation Research Registry
Alpha-1 Foundation and Research Update
Speaker : Walsh, , John

John Walsh's, Bio:plus

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.

Latest Research in Alpha-1 Pediatric Liver Disease

Jeffrey Teckman , MD's, Bio:plus

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.

Research Registry Update and Importance of Clinical Trials

Charlie Strange , MD 's, Bio:plus

 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.

Patient Centered Research: What We Do & Where You Fit In
ChiLDReN Research Study
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