SUPPORT THOSE IN NEED
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.
I was born with Ebstein’s Anomaly in 1996 and had my 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.
EAF Donates will donate an additional $20,000 to Boston’s Children’s Hospital to fund key research of the Cone Procedure. Dr. Gerald Marx accepts first check on behalf of the Hospital. May 23rd 2013 – Watch Arden’s Speech Here.
Dr. Gerald Marx Boston Children’s Hospital
The current research project looks at the patients that have had the Cone operation. We want to compare the echocardiograms, exercise tests, MRI, caths, electrophysiology and a quality of life questionnaire before and after the Cone operation here at Boston Children's hospital. We now have over 100 patients!! We will even be bringing some of those patients back for long term follow up. It will be the first such study of its kind. I think this will give us great information about the Cone operation, but also about Ebsteins Anomaly in general.