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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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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.

Health Care Reform/Insurance Changes
Speaker : O'Day, , Miriam
Topics : Advocacy
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.

Healthcare Reform and Advocacy
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.

Healthcare Reform/Advocacy
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.

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.

What's Happening in Washington, D.C. Affecting Alphas
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.

Access & Reimbursment
Speaker : O'Day, , Miriam

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Thank you to our generous program sponsors.

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