Alpha-1 Kids Virtual Support Group

The Alpha-1 Kids 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-1 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 include: Jen Childress, Mark Rabush, Sarah Johnson, Lora Shelton and Leah & Brad Zelk.

 

Missed any of the previous telecalls? Click on any of the links below to listen to the recordings.

 

February 18, 2014

Alpha-1 Association Resources Available for Families of Alpha-1 Children

Speaker: Cathey Horsak, Director of Community Programs, Alpha-1 Association

 

December 17, 2013

Research Update

Speaker: Jeffrey Teckman, MD, Professor of Pediatrics for Research, Director of Pediatric Gastroenterology and Hepatology, St. Louis University School of Medicine, Cardinal Glennon Children's Medical Center

 

October 15, 2013

As a Young Adult with Alpha-1, What Do We Need to Know?

Speaker: Sara Wienke, MS, CGC, Genetic Counselor, Alpha-1 Association


August 20, 2013

Your Child's Diagnosis - Overcoming Your Emotions of Guilt and Grief

Speaker: Parent Panel 


April 16, 2013

Discussing Alpha-1 with Teens: Peer Pressure & Family Dynamics

Speaker: Sara Wienke, MS, CGC, Genetic Counselor, Alpha-Association Genetic Counselor Program

February 19, 2013

Family Needs Focus Group

Speaker: Symma Finn, Ph.D, Health Science Administrator

 

December 18, 2012

Children's Liver Research Update

Speaker: Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry and Molecular Biology, Associate Chair of Pediatrics for Research, Director of Pediatric, Gastroenterology and Hepatology, Saint Louis University School of Medicine, Gardinal Glennon Children's Medical Center

 

August 21, 2012 

Nutrition, Exercise, Supplements & Medications for Alpha-1 Children

Speaker: Rosemary Nagy, MBA, RD, LD, Coordinator, Clinical Trials Unit, Pediatric Gastroenterology and Hepatology, Saint Louis University

 

August 9, 2011

Feedback regarding National Conference and Plans for 2012

 

May 10, 2011

Question & Answer Session with Experience Parents

 

March 8, 2011

Pulmonary Issues Facing our Children

Speaker: Charlie Strange, MD, Director, Alpha-1 Foundation Research Registry, Professor of Pulmonary and Critical Care Medicine, Medical University of South Carolina


January 11, 2011

Research Pipeline in the Next 5-10 Years

Speaker: Jeffrey Teckman, MD, Professor of Pediatrics and Biochemistry and Molecular Biology, Associate Chair of Pediatrics for Research, Director of Pediatric, Gastroenterology and Hepatology, Saint Louis University School of Medicine, Gardinal Glennon Children's Medical Center

 

December 14, 2010

Transplant Stories, Experienced Parents

 

August 25, 2010

Upcoming Liver Research and Participation in Clinical Trials

Speaker: John Walsh, President and CEO, Alpha-Foundation

 

April 27, 2010

Discussion and Question & Answer Session

 

March 23, 2010

Discussion and Question & Answer Session

 

 

To request more information about Alpha-1 Families or to request a peer connection please contact Cathey Horsak, Director of Community Programs & Outreach, at 1-877-346-3212 or horsak@alpha1.org

 

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