Kids With Heart NACHD

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CHD Awareness Week-A Letter from Our President

February 7, 2019

Being involved in Congenital Heart Defect Awareness efforts since 1991, I can tell you that CHDs are much more known than they were when we started on this road. There was no such thing as an IEP for kids with chds, there was no such thing as special services for the heart kids, in school or sports or anything else. The first recognized Congenital Heart Defect Day was February 14, 1999(?)- pretty sure that was the day. It was a national proclamation effort that was started by a mom, Jean Imperati, and aided by a lot of different support groups, parents,and at that time, the few CHD organizations. Yes, it gets frustrating but seeing people like Jimmy Kimmel come out and talk about his child's chd just goes to show you how far we have come. Over the years, chd affected many famous celebrities but they never wanted anyone to know. The fact that it took Shaun White this long for him to come forward to talk about his heart defects should be an indication of progress. Not only that but the multitude of non-profits dedicated to congenital heart defects is now overwhelming as well as the advocacy work that is being done. Also, back in the 1990s and early 2000s, the American Heart Assn wanted nothing to do with congenital heart defects. I has been in the last 5-10 yrs that they have gotten involved at all with heart defect research. All of this has been accomplished by parents like you who got involved on a small scale to make a BIG DIFFERENCE! Remember, there is strength in numbers and to quote a favorite phrase: United we Stand, Divided we Fall!!! Please do not give up!!!! THANK YOU FOR ALL THAT YOU DO!!!! 
Michelle L. Michelle Rintamaki
President, Kids With Heart National Assn for Children’s Heart Disorders, Inc.
(mom to John, 31, tetralogy of fallot with pulmonary stenosis, surgery 1/31/1990, arrhythmias- 2003-2006; pulmonary valve replacement 8/2/2005 
Facebook page https://www.facebook.com/kidswithheartnachd1985/www.kidswithheart.org

CONGENITAL HEART DEFECTS Awareness Day can be every day! Items available at www.kidswithheart.org