Friday, February 14, 2014

Happy Congenital Heart Defect Awareness Day!



Dear Heart Friends:

It is February 14th -- which of course means it's Congenital Heart Defect Awareness Day!


I absolutely love the image above because it speaks to me on so many levels.  This is definitely a day to celebrate with all of those who have survived living with congenital heart defects, but it's also a day to remember our CHD angels. Over the last 19 years, I have befriended so many heart friends whose children have been called to heaven way too soon. I love, remember and honor all of them today, too.


Our Texas Governor, Rick Perry, signed our proclamation again this year, as did so many others. I appreciate it when our government officials honor and respect our community at this very special time for us. Getting recognition and promoting our causes will help us toward our ultimate goal -- finding out what causes congenital heart defects so we can eradicate them forever!

Toward that end, a Heart Mom friend of mine, Dodi Weisbrod has created a petition and here is the link: http://www.change.org/petitions/the-american-heart-association-to-designate-100-of-funding-the-aha-receives-from-mini-heart-marathons-jump-rope-for-heart-and-advertising-using-children-born-with-heart-defects-to-congential-heart-defect-projects/suggested_petitions  I know it's a monstrous link but it's for a great cause. If you've ever been upset that the American Heart Association uses children in its advertising and yet only a very small percentage of their funding actually goes toward PEDIATRIC or CONGENITAL heart defect research, then you'll want to sign this petition. This petition is designed to request that all of the money the American Heart Association earns from using children or babies in their fund raising efforts be designated specifically for congenital heart defect research -- and not "trickle-down" research, but bona fide, real CHD research.


On a much more positive note, there is much that the American Heart Association does for which the congenital heart defect community should be grateful. For many years I was a keynote speaker for the American Heart Association Heart Heroes annual conference in Florida. Pepper Adair was the director of the program and she was indefatigable when it came to serving the CHD community in Florida. She moved the conference from city to city each year in order to reach ALL of the members of the CHD community in Florida at one time or another. Programs like these are precious and need to be appreciated by the CHD community.

In addition to the free, annual parenting conference that she hosted, she also has a terrific summer camp for kids called Camp Boggy Creek. Not all parents of children with congenital heart defects feel comfortable letting their children attend a summer camp. This camp has special counselors and medical volunteers that makes the experience for the children unforgettable.


Now, I shall end this blog on a personal note. Today my husband surprised me by having a very special group of men come to the house to serenade me this morning. I hope all of you enjoy your Valentine's Day/Congenital Heart Defect Awareness Day, as much as I am!




Please visit Baby Hearts Press at http://www.babyheartspress.com for resources for the congenital heart defect community.

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