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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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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.

Public Policy Update and How You Can Get Involved with Advocacy
Speaker : O'Day, , Miriam
Speaker : Walsh, , John

Miriam O'Day's, Bio:plus

Miriam O'Day manages Federal government affairs, including legislative and regulatory activities for the Alpha-1 Association and Alpha-1 Foundation. She works closely with membership organizations and coalitions including collaboration with the COPD Community. She is also responsible for Federal Legislative Affairs for the American Association for Respiratory Care (AARC). She chairs the Policy Committee for the US COPD coalition, working closely with the COPD Congressional Caucus.

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.

Keynote Address - Genetics as Your Partner
Topics : Genetics

John Mulvihil , MD's, Bio:plus

John Mulvihill graduated from the College of the Holy Cross, the Dartmouth Medical School, and the University of Washington Medical School. Dr. Mulvihill also trained at University of Washington Hospital and at the Johns Hopkins Hospital. He is a medical geneticist and pediatrician with 20 years experience at the National Cancer Institute, where he was Director of the Inter institute Medical Genetics Program. In 1990, he became founder, chair, and professor of Human Genetics at the University of Pittsburgh and co-director of the Pittsburgh Genetics Institute. In 1998, Dr. Mulvihill accepted the Children’s Medical Research Institute--Kimberly V. Talley Chair of Genetics, Professor of Pediatrics - University of Oklahoma. Dr. Mulvihill has been a member of 13 professional societies and has written 314 scientific articles and edited 13 monographs. His research has focused on the delineation of malformation and of family cancer syndromes, the genetics of human cancer, with an emphasis on late effects, reproductive and genetic, in cancer survivors, and on germ cell mutagenesis.

Impact of Alpha-1 Diagnosis on Parents and Children (Alpha-1 and Families)

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.

Taking A Family History
Speaker : McGee, CGC, Dawn

Dawn McGee, CGC's, Bio:plus

Dawn McGee attended Villanova University and obtained a Bachelor of Science degree in Biology and a minor in Psychology. She then went on to obtain her Master of Science degree in Genetic Counseling at Arcadia University. During her genetic counseling training, Dawn completed her thesis research on the experiences of caregivers living with a spouse diagnosed with Huntington’s disease. After graduate school, Dawn worked for two years at Presbyterian Hospital in Charlotte, North Carolina. She worked primarily as a prenatal genetic counselor; however, she also provided genetic counseling services in the cancer center and the intensive care nursery. While in Charlotte, Dawn formed a monthly support group for families with Huntington’s disease and became a board member of the North Carolina Chapter of the Huntington’s Disease Society of America. She was the Director of the Alpha-1 Association Genetic Counseling Center up until 2012.

Infectious Disease and Alpha-1

Camile Nelson Kotton, MD's, Bio:plus

Camille Nelson is the Clinical Director of the Transplant Infectious Disease and Compromised Host Program at the Massachusetts General Hospital, Harvard Medical School in Boston Massachusetts. She also directs the outpatient Transplant Infectious Disease Clinic. She graduated from the University of Chicago's School of Medicine, and completed her internal medicine training at The Hospital of the University of Pennsylvania followed by an infectious diseases fellowship at both the Massachusetts General Hospital and the Brigham and Women's Hospital. Her clinical interests include donor-derived infections, zoonoses, and travel and tropical medicine in the transplant setting. Her research interests center primarily on vaccines, involving both immune-compromised hosts, as well as live bacterial vectors in normal hosts. She has served on advisory boards involving issues in transplant infectious diseases. Dr. Kotton is the current president of The Transplant Infectious Disease section of The Transplantation Society.

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.

The Importance of Exercise

Robert A. Sandhaus, MD's, Bio:plus

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.

Oxygen: The Gas We Love to Hate

Robert A. Sandhaus, MD's, Bio:plus

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.

Emotional Impact of COPD in 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.

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