Children's Heart Foundation

The Children’s Heart Foundation is a United States health charity, whose mission is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects in children. It was founded in 1996 by Betsy Peterson, who recognized the need for an organization whose sole purpose is to fund this type of research after her 8-year-old son, Sam, died from multiple organ failure brought upon by a sudden heart related collapse.

A congenital heart defect (CHD) is a defect in the structure of the heart and great vessels of a newborn. Most heart defects either obstruct blood flow in the heart or vessels near it or cause blood to flow through the heart in an abnormal pattern, although other defects affecting heart rhythm such as long QT syndrome can also occur.[1] Heart defects are among the most common birth defects and congenital birth defects are the leading cause of birth defect-related deaths. [2]

As of 2007, The Children’s Heart Foundation has joined forces with the Adult Congenital Heart Association[3] /(ACHA) and the Congenital Heart Information Network (CHIN)[4] to form the National Congenital Heart Coalition.[5]

Facts about CHD's

• CHDs are the #1 birth defect in the world [6]

• CHDs affect approximately one out of every 100 births, or more than 35,000 babies each year [7]

• CHDs are fully responsible for one third of all birth defect-related deaths

• More than 50 percent of all children born with a CHD will require at least one invasive surgery in their lifetime [8]

• More than 91,000 life years are lost each year in the United States because of CHD's [9]

FUNDRAISING

The Children’s Heart Foundation is a tax-exempt 501(c)(3) corporation that holds activities across the United States to raise awareness of Congenital Heart Defects and to raise money to be used for research. One of their most popular events is the annual “Hearts at Play” celebration held in Chicago. Other events include golf outings, charitable walks, and galas. The Children’s Heart Foundation also accepts donations via mail or their website. To date, CHF has funded 37 research projects totaling over $3.4 million. Several of these studies supported by CHF continue to be funded by the National Institutes of Health. In the past decade, death rates for congenital heart defects have declined by 30 percent because of the advances made through research. Much of the research focus is based upon but not limited to:

• Molecular genetics/biochemistry

• Devices/procedural research (catheterization and surgical)

• Long term care of CHD children as they become adults

FUND ALLOCATION

The Children’s Heart Foundation is the only organization that strictly funds research for congenital heart defects. The CHF is not affiliated with any one medical institution or organization. Rather, the foundation relies on a Medical Advisory Board[10] to make recommendations on which research is the most relevant and in need of funding. Money raised in any one calendar year funds research done that same year.

NATIONAL SPOKESPERSON

MacKinzie Kline is an international golf champion and one of the most promising junior golfers in the country. She was born with a Single Ventricle with Transposition of the Greater Vessels. “Mac” has benefited greatly from heart defect research and now actively promotes awareness of the Children’s Heart Foundation.

EXTERNAL LINKS

Official Website [11] Adult Congenital Heart Association Website [12] Little Hearts Website [13]