The Children’s Heart Foundation is a 501(c)(3) tax-exempt charitable organization that does not receive any government funding. The goal of the foundation 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.
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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 (ACHA) and the Congenital Heart Information Network (CHIN) to form the National Congenital Heart Coalition.
Fundraising
The Children’s Heart Foundation holds activities across the United States to raise awareness of Congenital Heart Defects and to raise money to be used for research. CHF holds the Congenital Heart Walk, a joint effort between CHF and ACHA, throughout the United States. The Congenital Heart Walk is a way to show the nation how a team of inspired individuals can make a difference. Funds raised support the missions of both of these national non-profit organizations who are dedicated to improving the quality of life of those living with congenital heart disease (CHD). The Children’s Heart Foundation also accepts donations via mail or their website.
Every February, Congenital Heart Defect awareness month, CHF teams up with Build-A-Bear workshop. Build-A-Bear customers are asked to donate $1 of their purchase to CHF. This partnership continues to enable CHF to continue funding the most promising research to advance the diagnosis, treatment, and prevention of CHDs.
To date, CHF has funded 48 research projects totaling over $4.7 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.
CHF has 11 state chapters that hold events to raise money for CHD research and to support those affected by CHDs in their area.
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 [3] 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.