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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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Building Friends for a Cure

Angela McBride's, Bio:plus

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.

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.

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."

Health Care Reform
Speaker : O'Day, , Miriam

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.

50 Years of Alpha-1 History and Into the Future

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.

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.

New Programs & Community Connections
Alpha-1 Foundation Update

Angela McBride's, Bio:plus

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.

Buliding Friends for a Cure

Angela McBride's, Bio:plus

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.

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.

Social Media- Pros and Cons

Sara Weinke, MS, CGC's, Bio:plus

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.

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