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To: President George W. Bush
On February 14th, 2004, families and professionals across the country will join together to celebrate Congenital Heart Defect Awareness Day. This day is set aside each year to honor families of children and adults with congenital heart defects and disease (CHDs) and the professionals who work with them, and to cherish the memory of lives lost.
Currently, the issuance of proclamations for Congenital Heart Defect Awareness Day is limited to local and state governments. While the participation of these officials is greatly appreciated, a Presidential Proclamation would make an unprecedented impact on raising awareness about CHDs.
Raising national awareness about Congenital Heart Defects is important on many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.
While it is tempting to assume that proclaiming February as American Heart month addresses the needs of CHD families and professionals, this is not so. The main purpose of the AHA is to fight acquired heart disease and strokes. Additionally, there is no mention of addressing the needs of Congenital Heart patients in their long-term goals. The causes and most treatments for CHDs are distinctly different from acquired heart disease. This is why many adult CHD survivors continue to follow with pediatric cardiologists or those that specialize in adult congenital conditions.
Each year, an estimated 40,000 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.
In addition, there are currently over 1 million adults with CHD in the United States and this number is expected to grow by 5% each year. This increasing number of adults with CHD will consume a greater portion of health care dollars in the future and it is vital that health professionals, policy makers, and the public be educated about this disease to understand the specific health care, employment, and insurance issues for this population.
As parents of children affected by heart defects, adults with CHD, and the family members that support them, there is little we can do beyond loving them and getting them the best medical attention currently available. But by raising awareness, we can make a difference for future generations and find meaning in the challenges our children and adults face. As a parent, I’m sure you can understand the significance of this. As a leader, you can catapult awareness of CHDs to the forefront of Americans' minds by simply recognizing one day in February for CHD families and professionals.
Thank-you for your consideration of our request to grant a Presidential Proclamation for Congenital Heart Defect Awareness Day: February 14, 2004.
Sincerely,
The Undersigned |
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