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.
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This program provides the Alpha-1 Community with access to educational programs from our National Conference and National Education Series.
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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.
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.
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.
Marc Boutin is the Executive Vice President and Chief Operating Officer of the National Health Council, an organization that brings together all segments of the health care community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. In addition to overseeing financial management and operations, Boutin builds consensus among member patient advocacy organizations enabling them to speak with one voice on systemic health research and health care policy initiatives. This united effort results in legislation and regulations that address the collective needs of patients and their family caregivers. Boutin has been actively involved in health advocacy, policy, and both federal and state legislation throughout his career. He is a member of the International Alliance of Patients' Organizations Governing Board, Community Health Charities Board of Directors, PCORI Advisory Panel on Patient Engagement and the North America Advisory Board to the Drug Information Association. He has also served on Institute of Medicine committees, National Institute of Health panels, and the Agency for Healthcare Research and Quality's stakeholder group.
Tom Larmondra is a Senior Manager of Reimbursement & Advocacy at Baxter BioScience, where he supports three franchises, including Alpha-1. He has worked in the healthcare industry for 15 years. During his tenure with Baxter, he has educated patient organizations, individuals, and specialty pharmacies on healthcare insurance as well as working with state departments of health and advocacy groups to ensure open access to all medically appropriate therapies.
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.
James is Director of Government Relations for Patient Services Incorporated. He began his career in patient advocacy at 19, lobbying Congress for passage of the Ricky Ray Hemophilia Relief Fund Act on behalf of the Hemophilia Community. Mr.Romano is the fourth generation of his family to advocate for the plasma community. He worked on Capitol Hill as a legislative assistant and as a contract lobbyist. Mr. Romano earned a BA from Marymount University, an MPA from George Mason University and is currently working on his MBA. He resides in Fredericksburg, Virginia with his wife and daughter whom he is training to be the fifth generation to advocate for the plasma community.
Angela McBride is the Director of Community Relations and Development for the Alpha-1 Foundation. She is responsible for leading the volunteer team in developing resources to ensure a strong base of financial support for the organization's mission to fund research towards a cure for Alpha-1 Antitrypsin Deficiency. Ms. McBride has worked in the Alpha-1 Community for the past 12 years, devoting her time and energy to empowering individuals to support the mission of the Alpha-1 Foundation. In 2010 she received the "Special Appreciation Award" at the 2010 Alpha-1 National Education Conference.
Sara Wienke attended the University of North Carolina at Chapel Hill and obtained a Bachelor of Science degree in Biology with a minor in chemistry. She obtained her Master of Science degree in Genetic Counseling at the University of North Carolina at Chapel Hill. After graduate school, Ms. Wienke moved to Charleston, SC where she has been working at the Medical University of South Carolina (MUSC) as the Program Director of the Alpha-1 Association Genetic Counseling Program for the past year. She had previously taught undergraduate biology labs at UNCG and worked as a lab manager in Cell Biology at Duke University.
Minneapolis Alpha-1 Education Day
Alphas of Northern Illinois Support Group
Alphas of Northern Illinois Support Group Meeting - Rockford, IL
West Texas Alphas Support Group
West Texas Alphas Support Group Meeting - Lubbock, TX
Reno/Tahoe Alpha-1 Support Group
Reno/Tahoe Alpha-1 Support Group Meeting - Reno, NV
Dakotaland Alphas Support Group
Dakotaland Alphas Support Group Meeting - Sioux Falls, SD
SoCal Roadrunners Alpha-1 Support Group
SoCal Roadrunners Alpha-1 Support Group Meeting - Palm Desert, CA
Glass City & MI Alphas: Walk on the Wild Side
Northwest Indiana (NWI) Alpha-1 Support Group
Northwest Indiana (NWI) Alpha-1 Support Group Meeting – Dyer, IN
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