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The Alpha-1 Families Virtual Support Group is dedicated to providing support, education and information for Alpha-1 families. This is accomplished by:

  • Centralizing educational and informational resources on this webpage

  • Facilitating Peer Connections

  • Providing information and resource links

  • Facilitating an online Discussion Forum

  • Conducting Telecalls with Physicians/Experts/Parents

A committee of Alpha parents help to identify needs for this Group and engage in planning for support and educational telecalls and programs at the Alpha-1 Association National Education Conference. Members are: Jen Bauernfeind, Mark Rabush, Sarah Johnson, Lora Shelton and Leah and Brad Zelk.

You can join the Alpha-1 Families Support Group and receive notice of telecalls and notifications when additional resources are listed on this site.

To listen to previous telecalls, click here.

To request more information about Alpha-1 Families or to request a peer connection please contact:

Cathey Horsak

1-877-346-3212

horsak@alpha1.org

 

Please click here to view a list of:

Online Support Resources

Pediatric Liver Resources

Financial Resources

Research Programs

 

E-Education

The following programs are available online from the Alpha-1 Association's National Education Conference (please allow a few minutes for page to load):

2010 National Education Conference

Family Awareness and Testing

Mark L. Brantly, M.D., University of Florida

Dawn McGee, MS, CGC, Alpha-1 Association Genetic Counseling Center

Dell Witcher, Alpha-1 Association Board Member

Diego Shmuels, M.D., MSN, Manager of Program Administration, Alpha-1 Foundation

Taking a Family History

Dawn McGee, MS, CGC

Certified Genetic Counselor

Alpha-1 Association

Genetic Counseling Center

Helpful Hints for Caregivers in the Home

Mary Gilmartin, BSN, RRT

Impact of Alpha-1 Antitrypsin Deficiency

on Children's Lung Health

Blakeslee E. Noyes, M.D.

Professor of Pediatrics,

St. Louis University School of Medicine

How to Talk to Your Children About Alpha-1

Dawn McGee, MS, CGC

Certified Genetic Counselor

Alpha-1 Association

Genetic Counseling Center

 

2009 National Education Conference

Alpha-1 Liver Disease in Childhood/Liver Transplant in Children

Philip Rosenthal, M.D.

University of California

San Francisco Children's Hospital

Talking to Children about Alpha-1

Dawn McGee, MS, CGC

Alpha-1 Association

Genetic Counseling Center

Latest Liver Research - CliC

Ron Sokol, M.D.

The Children's Hospital of Denver

Helpful Hints for Caregivers

Lynn Oveson,

RN, MN, ANP

2008 National Education Conference

 

Potential Breakthroughs in Alpha-1 Liver Research
Jeffrey Teckman, M.D.

Saint Louis University School of Medicine
Cardinal Glennon Children’s Medical Center

Potential Breakthroughs in Alpha-1 Lung Research
David Lomas, M.D., Ph.D

Cambridge Institute for Medical Research
Cambridge University

Genetics
Dawn McGee, MS, CGC
Alpha-1 Association
Genetic Counseling
Medical University of South Carolina

Liver Transplant MELD/PELD Scores
Jose Derdoy, M.D.
Cardinal Glennon Children’s Medical Center

Alpha-1 Parents
Mark Rabush
Alpha-1 Kids

 

2007 National Education Conference

 

My Name is Joe: A Family’s Journey
through Transplantation

Richard Holloway, Ph.D.
Medical College of Wisconsin

Resources for Alpha-1 Parents

Mark Rabush
President
Alpha-1 Kids