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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.
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.
Please visit our
daughters web site
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
hear defects, to help us choose the programs.
HOW TO HELP |
We are thrilled
to announce that our event on June 19th raised over $50,000.
Thank you to all our sponsors and attendees
for such a special evening.
Learn
More
Donate On-Line
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Ebstein's
anomaly is a rare disease involving the right side of the heart.
This disorder occurs when the tricuspid valve, that divides the
two chambers of the right side of the heart, does not form
correctly. Normally, the tricuspid valve separates the right
atria and right
ventricle. In Ebstein's anomaly, the valve forms too far
down in the
ventricle. This makes the right
ventricle smaller and weaker than normal. Often there is
also a connection between the left and right atria. The
tricuspid valve usually has three parts that move freely. In
Ebstein's anomaly, one or two parts of the valve get stuck to
the walls of the heart and don’t move correctly, so blood can
leak back in the wrong direction.
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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!
The have also written and published a
parent resource book, “It’s My Heart,”
and chartered
three chapters across the United States.
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