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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.

Life After Transplant Panel
International Alpha-1 Patient Congress & Alpha-1 Foundation 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.

Panel of Alpha-1 Parents Open Q & A
Speaker : Panel, , Parents
Access & Reimbursement

Barbee Bennington's, Bio:plus

Barbee Bennington comes to the Association with eight years of Alpha-1 Advocacy experience with Coram. She has been a member of the Association since 2002 when she began her six year position as Support Group Leader for the Alphazonies. In 2008, she was the recipient of the Claude Baril Communications Award, in recognition of her contribution to enhancing communication for Alphas through the Alphazonies Newsletter. Barbee has an extensive 30 year background in community volunteer service. Being able to be involved with the Alpha-1 community on a national, grassroots level has been a passion for Barbee since the death of her Alpha niece in 2000 and the diagnosis of her son as a ZZ.

Kym H. Kilbourne's, Bio:plus

Kym Kilbourne is the chief federal lobbyist for the Plasma Protein Therapeutics Association (PPTA ), a global trade association comprising manufacturers of plasma protein therapies, which are unique biologicals that treat rare diseases and conditions, and the collectors of human plasma, the starting material essential to produce them. Kym, who has been with the Association for nearly six years, focuses on preserving patient access to life-saving plasma protein therapies and is charged with leading and executing the Association's strategic federal advocacy agenda by working collaboratively with member companies, patient groups and aligned organizations.

Living your Best Life with Alpha-1

Rachel Norwood, MD's, Bio:plus

Rachel Norwood grew up in Colorado and completed both medical school and residency in Psychiatry at the University of Colorado's Science Center. When she graduated, she began her medical career at National Jewish Medical and Research Center in Denver. There, she worked with patients with severe respiratory disease and began her study of the psychosocial impacts of those illnesses. Her research focused on how best to manage the depression that often adds to the difficulties of patients with COPD. She also developed a niche teaching patients how to manage insomnia without medication. After six great years at National Jewish in 2006, she moved into a private practice in psychiatry based in Denver, although she still takes calls at National Jewish while others are away on vacation.

Induced Pluripotent Stem (iPS) Cells and Alpha-1
Topics : Research

Andrew Wilson, MD's, Bio:plus

Andrew Wilson is Assistant Professor of Medicine at the Boston University School of Medicine where he practices Pulmonary and Critical Care Medicine. Dr. Wilson attended medical school and performed his residency at the University of Texas Southwestern Medical School in Dallas, TX before moving to Boston. Dr. Wilson’s research focuses on regenerative medicine approaches to advancing understanding of and treatments for alpha-1 antitrypsin deficiency. In addition to studying AATD in the laboratory, Dr. Wilson is the Director of the Alpha-1 Center at Boston Medical center, where he works with Drs. Darrell Kotton and Rob Lowe caring for patients with AATD.

Lung Transplantation: Who is it for and how do they do it?
Topics : Lung , Transplantation

Timothy Whelan, MD's, Bio:plus

Timothy Whelan is Associate Professor of Medicine and Medical Director for lung transplantation at the Medical University of South Carolina. He relocated to South Carolina in 2010 to restart the lung transplant program at the Medical University and prior to this he was an Associate Professor at the University of Minnesota where he was a member of the lung transplant program for 7 years. He is an active member of the Thoracic Committee for the United Network for Organ Sharing and has an active interest in the management of patients with advanced lung diseases as well as the management of the potential organ donor. In addition to his role as the medical director for lung transplantation he is also the Associate Medical Director for the organ recovery division of LifePoint, Inc. He also currently collaborates with his colleagues at MUSC on research protocols for patients with chronic obstructive pulmonary disease.

Basic Nutrition for Adult Liver Affected Alphas

Virginia "Ginger" Clark, MD's, Bio:plus

Virginia "Ginger" Clark serves as the Associate Program Director of the Transplant Hepatology Fellowship and as an Assistant Professor of Medicine at the University of Florida's Division of Gastroenterology, Hepatology, and Nutrition. She has been the recipient of the Fellowship Award from the American Association for the Study of Liver Diseases Advanced Hepatology. Her research interests are focused on Alpha-1 Antitrypsin Deficiency and Fatty Liver Disease. She serves as a member of the Board of Directors of the Alpha-1 Association.

Healthy Living: Pediatric Liver Nutrition & Exercise
Natural History of Live Disease & New Therapy Development
Topics : Liver , Research

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.

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