The hardest part

I threw my hat into the ring pretty late when it came to organizing the Chicago Parade of Cherubs.  I originally created the Virtual Parade of Cherubs because I didn't think I'd be able to pull together an actual parade given everything else I have going on.  However, as I saw more CHERUBS state reps and volunteers jumping on board, I actually felt guilty.  As a result, I decided to organize a parade here in Chicago.  I knew that an awareness event like this had never taken place in Chicago before, so there were members (and nonmembers) just looking for an excuse to get together.

Now I plan events and entertain at children's parties as side business with my wife, so I have a lot of connections in the Chicago area.  Therefore, planning the actual logistics was not actually the hardest part.  Plus since my son was at Children's Memorial Hospital for almost 1 month when he was born (which is actually an incredibly short period of time for a CDH baby), I knew surgeons, nurses, and neonatologists over there.  So finding a location wasn't the hardest part either.  

The hardest part had to do with promotion of the event.  In Chicago it is very hard to make news...especially for a cause that virtually no one has ever heard of.  But I am actually referencing a specific aspect of promotion.  A number of the active volunteers decided to start reaching out to states, cities, and towns to request proclamations, proclaiming April 19 as the Day of CDH Awareness.  

Requesting the actual Proclamation was actually not that difficult.  However, the hard part was making sure the wording was correct.  We had to be extra careful because another organization has trademarked the phrase "Congenital Diaphragmatic Hernia Awareness Day".  Would you believe the same organization had trademarked "CDH Awareness" too?  However, in a landmark decision, that trademark was removed on April 19, 2010.  Unfortunately, the "Awareness Day" trademark still stands.  It is natural to assume that if an organization is trying to raise awareness on a specific day for a cause, that it would be called an "Awareness Day".  However in our case, we have to call it a "Day of Awareness" or some other play on words.  

Of the 15+ states, cities, and towns issuing Proclamations, I can't even tell you how many we had to go back to and request that the wording be changed.  Some understood once we explained the situation.  Others, refused to change the wording when both organizations clearly were trying to generate awareness for the same cause.  This put us in a bit of a bind.  We couldn't acknowledge those Proclamations for fear of legal action.  

I know all charitable organizations have their issues (especially as the cause becomes more well known).  But for a birth defect that virtually no one has heard of...this is just counterproductive.  We need to be working together to raise awareness to justify the need for further research.  No family should have to suffer the way mine and 1599 others did in 2010 (or any year). And that doesn't even include the non-US families affected.  

There are much better ways for charitable organizations to spend their time, resources, and money than filing cease and desists and lawsuits.  I am just a volunteer and definitely not a lawyer.  But that is my opinion.