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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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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.

Lung Health Parent Panel

Jen Childress's, Bio:plus

Jennifer (Jen) Childress is the mother of two young daughters who have ZZ Alpha-1 Antitrypsin Deficiency. Four of her first cousins lost the battle with Alpha-1, as well. As a result, Jen very much wants a cure for Alpha-1 and likes to say, "Long live the Alphas!" Upon the diagnosis of her oldest daughter in 2002, Jen's quest for information brought her to the Alpha-1 Association. With information in hand, Jen got actively involved with her local support group in Wisconsin. Jen now serves as the Vice Chair of the Alpha-1 Association Board of Directors. Having graduated from the University of Wisconsin-Madison with a BS in Family & Consumer Journalism, Jen has written articles for her local support group as well as the Alpha-1 Association's Alpha-1 News. With past experience in the field of technical writing, Jen uses her communication and instructional design skills to help Association members diagnosed with Alpha-1. Writing is a passion of Jen's, and she often documents life with the "Alpha Girls" on her personal blog, Unique But Not Alone. In her professional life, Jen is a multimedia instructional designer for a financial services company, FIS, where she creates adult learning content for FIS's clients.

Alan Barker, MD's, Bio:plus

Dr. Alan Barker is Professor of Medicine at Oregon Health and Science University. He has been involved in the Alpha-1 community for 25 years performing patient care and consultations, being part of national collaborative clinical research, leading educational activities, and promoting awareness efforts. He directs the OHSU Alpha-1 Foundation Center of Excellence in Portland, organizes and attends a monthly education and support group, and organizes and participates in an annual regional educational forum for Alphas, their families and friends.

Training, Education and Empowerment Program for Advocates

Patrick Collins 's, Bio:plus

Patrick Collins is the Director, Public Affairs for CSL Behring and has been with the company since June 2001. In this capacity, he is the company’s representative on Capitol Hill advocating on behalf of a wide range of access to care issues. He has testified before Congress, state legislative committees, state agencies and municipal bodies. Mr. Collins has 16 years experience in public policy with 12 of those specific to health policy. Prior to joining CSL Behring, he served as Director of Government Relations for the National Hemophilia Foundation (1997-2001). His chief accomplishment during this time was a central role in the congressional passage and funding of the $750 million Ricky Ray Hemophilia Relief Trust Fund for those who contracted HIV through the use of contaminated blood clotting factors. Mr. Collins was also a central figure in the creation of the Patient Notification System. He holds a B.A in Government and Politics and an M.A in Public Policy from St. John’s University in Jamaica, New York.

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.

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.

Medical Adherence
Topics : Liver

Jeffrey Edelman, MD's, Bio:plus

Jeffrey Edelman is a UW associate professor of medicine. His clinical interests include lung transplantation, pulmonary vascular disease and advanced lung disease due to interstitial lung disease, cystic fibrosis and chronic obstructive pulmonary disease. His main focus is in the clinical care of patients with these conditions, as well as clinical research aimed at advancing treatment and understanding in these areas.

New Programs & Community Connections
Alpha-1 And NIH: Toward a Ne Type of Disease Research Partnership
Topics : Research

Raynard Kington, MD's, Bio:plus

Raynard S. Kington began his tenure as the 13th President of Grinnell College in August, 2010. The former deputy director and acting director of the National Institutes of Health (NIH), Kington has brought a fresh perspective to the academic world of liberal arts colleges. President Kington attended the University of Michigan where he received his B.S. with distinction and his M.D. He completed his M.B.A. with distinction and Ph.D. at the Wharton School of the University of Pennsylvania. He was elected to membership in the Institute of Medicine of the National Academies of Science in 2006. Dr. Kington has served as an assistant professor of medicine at UCLA and as a senior scientist at the RAND Corporation. Prior to coming to NIH, he directed the National Health and Nutrition Examination Survey at the Centers for Disease Control and Prevention, one of the largest studies of the health of the population of the United States.

Private Health Insurance Tool Kit

Tom Larmondra's, Bio:plus

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 '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.

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