Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, July 3, 2012

3rd Annual CDH Summit - You can View!

Our 3rd Annual CDH Summit in Colorado was amazing.  We have the following links to the "raw" presentations we had a live stream available for everyone to attend.  Thank you all who tuned in and please bear with these - new technology and we are all learning!  We hope to do this for all future summits too!  Nothing compares to being there and meeting the amazing speakers and other families.  Truly, there is healing and lifelong friends confirmed at these meetings!  No one goes away without a hug!

We would also like to thank each of those that presented information or their stories. 

                            Long Term Care for CDH Children

Susan Marshall, NICU Dietician - CDH Infants - Nutrition for the CDH Neonate

Katie Edic, 29 year old CDH Survivor - also in the above link video footage

Julia Wynn, MS - Certified Genetic Counselor/Research Coordinator, New York Presbyterian Columbia - DHREAMS

Meaghan Russell, MPH, PhDc, Pediatric Surgical Research Laboratories, MassGeneral Hospital for Children and Anna Frangulov, Research Coordinator, Boston Children's - both with the Pediatric Surgical Research Laboratories for the CDH Study

We would also like to thank Amber Burton of Team Abel - Colorado Chapter of Breath of Hope and Eva Schaeffer who both helped to put together all the events and coordinated everything so well!  Your work is invaluable! 

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