Our daughter was born with Ebstein's Anomaly in 1996 and had her first surgery in May of 2007. After working with many of the top surgeons around the country, it became clear to us that advances in new valves and new repair techniques in surgery would greatly improve the outcomes for patients of all ages.
who we are
The goal of the Ebstein's Anomaly Foundation is to fund research in order to advance the diagnosis, treatment and prevention of this rare congenital heart defect. This will benefit not only patients with Ebstein's but also many others with related congenital heart defects.
what we are doing
Each year we plan to fund the most promising research programs for heart defects related to Ebstein's Anomaly. We will rely on a Medical Advisory Board, consisting of doctors and institutions who are experienced with Ebstein's as well as other cases of congenital heart defects, to help us choose the programs.How to help
who we work with
We have partnered with
The Children's Heart Foundation. This will allow us to quickly have access to their Medical Advisory Board of 31 leading doctors in the fields of cardiology, pediatrics and cardio-thoracic surgery. Their board's capability and vision are evidenced by the several projects they've recommended for funding which are already being used in hospitals, or are being tested and/or funded by the National Institutes for Health (NIH).
Since 1996, The Children's Heart Foundation has funded 30 research projects with more than $2.5 million dollars! The have also written and published a parent resource book, "It's My Heart,"and chartered three chapters across the United States.