The End of A Beginning

February 16, 2010 at 4:40 pm 3 comments

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.

Entry filed under: CHD Awareness, CHD Legislation, CHD Research, Congenital Heart Defect, Congenital Heart Defect Fundraising. Tags: , , , , , , , , , .

Letter From a CHD Survivor Things I Wish I Had Known

3 Comments Add your own

  • 1. Melissa  |  April 4, 2010 at 7:46 pm

    We’d love for you to be involved with IHH’s CHD awareness week efforts next year!!

  • 2. Monica  |  November 14, 2010 at 3:38 am

    I was searching google with different requests trying to find where our non-profit comes up in results and I found your blog. I just read your post from Feb. You asked if anyone ran a successful non-profit that is strictly for heart defect research and awareness. We are not local to you, but are fighting this battle for all children born with heart defects. I myself had a daughter born with HLHS (no left ventricle) and after she passed away we had to find a way to make a change for kids like her. Please visit our website or our facebook page at We host a number of activities to raise awareness and raise funds for research and many more are in the planning stage.

    Hope you have better luck with the media (I’ve found our local papers are very supportive but the tv stations not so much.)

  • 3. Lynn  |  February 17, 2011 at 11:10 pm

    I feel the same way about this year. It was our first year as chd parents and aside from telling other parents at our daughter’s preschool and my yoga mom class, everyone else was a CHD parent, too. Have you heard of the Children’s Heart Foundation? They only research chds. In June 2 men will bike from CA to NY (for the second year) to raise money for the CHF and promote chd awareness. Perhaps we can use our social networks and local chd support groups to help advertise their efforts. They got recognized on GMA last year in NY. for more info.


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