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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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Alpha-1 Lung disease and Importance of Respiratory Therapy

Mark Brantly, MD's, Bio:plus

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.

Overview of Alpha-1 Antitrypsin Deficiency

Mark Brantly, MD's, Bio:plus

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.

Nutrition in Alpha-1 Antitrypsin Deficiency
Speaker : Lamb, RD, Lisa

Lisa Lamb, RD's, Bio:plus

Lisa attended Florida International University and obtained a Bachelor of Science degree in food and nutrition. Lisa is registered and licensed dietitian in the state of Florida. She has worked in the medical profession for 25 years in varied roles of food service management, nutrition support services,and is a professional speaker and educator.Lisa began her experience with the Alpha-1 community over the last year.

Alpha-1 Antitrypsin Deficiency 101: Lungs & Liver

Kyle Hogarth, MD's, Bio:plus

 Kyle Hogarth received his medical degree from Case Western Reserve University in Cleveland and completed his residency in internal medicine and a fellowship in pulmonary and critical care medicine at the University of Chicago Medical Center. Dr. Hogarth’s research focuses on improving quality of life and outcomes for patients with AAT deficiency, improving AAT deficiency diagnosis, and improving the early detection and management of lung cancer. He is an investigator in numerous clinical trials for these diseases. In 2009, he received the Department of Medicine Residency Award for Outstanding Teaching. In 2011 and 2007, he received the Department of Medicine’s Outstanding Faculty Clinical Service Award. In addition to his clinical and research work, he is on the Editorial Board for the journals of CHEST and Proceedings of the American Thoracic Society. He runs a large clinic devoted to the care of Alpha-1 patients.

Supplements, Procedures and "Traditional" Therapies

Kyle Hogarth, MD's, Bio:plus

 Kyle Hogarth received his medical degree from Case Western Reserve University in Cleveland and completed his residency in internal medicine and a fellowship in pulmonary and critical care medicine at the University of Chicago Medical Center. Dr. Hogarth’s research focuses on improving quality of life and outcomes for patients with AAT deficiency, improving AAT deficiency diagnosis, and improving the early detection and management of lung cancer. He is an investigator in numerous clinical trials for these diseases. In 2009, he received the Department of Medicine Residency Award for Outstanding Teaching. In 2011 and 2007, he received the Department of Medicine’s Outstanding Faculty Clinical Service Award. In addition to his clinical and research work, he is on the Editorial Board for the journals of CHEST and Proceedings of the American Thoracic Society. He runs a large clinic devoted to the care of Alpha-1 patients.

Robert 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.

Nutrition for Alphas

Karina Fugett, RD's, Bio:plus

Karina Fugett, RD, LD, CDE, is a registered and licensed dietitian that specializes in diabetes, cardiac, renal, and pulmonary nutrition. She currently works at St. Joseph Medical Center as the primary outpatient dietitian where she has been for the past four years. She is the Cardiac Rehab and Pulmonary Rehab Dietitian at St. Joseph Med Center. She is also a Certified Diabetes Educator and has presented in various audiences on healthy meal planning, heart-healthy cooking, portion control, and general nutrition. She received her Bachelor's Degree in Dietetics from Brigham Young University and is currently pursuing a Master's degree in Dietetic Administration from Utah State University. She has a passion for healthy eating and knows just how well nutrition can affect a person's overall quality of life.

This Alpha's Path to Action and Accountability

Karen Erickson's, Bio:plus

Karen is a lung-affected Alpha who resides in Newbury Park, California. Karen has been active in the Alpha-1 Community for four years.   She has ridden her bike under the Team Alpha-1 banner in bike treks throughout California and in the annual Cape Cod Bike Trek in Massachusetts bike ride. She created and produced t-shirts to create awareness for Alpha-1. She has been an Alpha-1 speaker at the American Thoracic Society and has spoken at Support Group meetings. She is a member of the Alpha-1 Association Los Angeles Support Group.  Karen says, “First and foremost, I will put myself to work to find a cure for Alpha-1 Antitrypsin Deficiency. My intentions with the Alpha-1 Association will follow that goal. I am under the firm belief that the empowerment of our patient population through education, advocacy and support will lend itself to that end."

Pulmonary Function Test and Results

Jorge Lascano, MD's, Bio:plus

Jorge Lascano, MD, is the Assistant Director of the Adult Cystic Fibrosis Center at the University of Florida's Department of Medicine Division of Pulmonary, Critical Care and Sleep Medicine. His clinical research interests include Alpha-1, COPD, Cystic Fibrosis and Non-CF Brochiectasis. He is a member of the American Thoracic Society and the American College of Chest Physicians.

Unlocking the Family Genes: The Key to a Healthier Life
Speaker : Walsh, , John
Topics : Advocacy

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.

Coping with a Chronic Illness
Speaker : Burd, MD, Jeremy

Jeremy Burd, MD's, Bio:plus

Jeremy Burd, M.D., is a Philadelphia native who moved to Kansas City in 2005 to practice psychiatry at St. Luke's Hospital. He has a busy outpatient practice and also provides support to the consult service. He and his partners specialize in patients with medical problems who have psychiatric disorders. He completed medical school at the Pennsylvania State University in Hershey, PA and residency at the Karl Menninger School of Psychiatry in Topeka, KS. He then moved to New York for 5 years where he completed a geriatric psychiatry fellowship at Mt. Sinai and worked doing inpatient and outpatient psychiatry.

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