The End of A Beginning

CHD Awareness week came and went.  This year, I really wanted to help.  At the end of it all, I feel a world away from the awareness I hoped to raise.  I blogged all week, posted facebook statuses about CHD, was successful in getting Governor Herbert of Utah to issue a proclamation as well as Mayor Godfrey of Ogden, Utah.  Mayor Godfrey was kind enough to present his proclamation to our daughter.  I read about congenital heart defects and talked about it….with lots of people who already know about it.

What I was NOT able to do that I really wanted…

*Get media attention.  I contacted numerous members of the media, hoping they would cover the proclamation issue or write a story about CHD or cover it on the news.  My queries fell on DEAF ears.  I saw lots of cute stories in our local paper about a darling newlywed wife who covered her husband’s car in construction paper hearts, fun crafts to make for Valentine’s Day, a local Chocalatier who was named as one of the state’s best…lots of cute stories about Valentine’s Day, but not a word written or spoken about CHD!  Even our mayor’s office attempted to contact the media, they ignored his query just as they did mine.

*Sponsor an event.  I came across the 1 in 100 group too close to start anything.  I thought about a balloon launch, I read about a family who has teamed up with a local restaurant to offer 20% off dinner and raise proceeds on February 14, I heard about a friend who sets up a table at our Children’s Hospital…but I did not sponsor an activity.

*Get as involved as I wanted to.  I’ve read lots of posts and discussion boards this last week with lots of people complaining about how hard it is to gain media attention, get famous spokespeople or endorsements from celebrities, get legislation even introduced let alone passed.  I’ve heard that some feel there are way too many small localized groups and what we truly need is one large organization.  The American Heart Association is certainly large and national, however; they focus more on adult heart disease.  Celebrities, epsecially women, attend the annual heart truth red dress fashion show, in support of heart DISEASE which is much different than heart DEFECTS.  Likewise, the March of Dimes devotes a small portion of their time and interest to CHD, but focus more on premature birth and a generalized fight against all birth defects.

So, what is needed?  Where do I go from here?  If you had a successful CHD week please let me know what you did and HOW you did it.  If you have a successful non-profit organization that supports congenital heart defects, congenital heart defect research, support to patients and families affected by CHD, sponsoring heart surgeries for needy individuals and families…anything that is successful, please let me know.  I hope to rally the troops, continue my fight against this killer, and devote more of my time to overcoming and defeating Congenital Heart Defects.