Monday, October 27, 2008
Official Congenital Diaphragmatic Hernia Awareness Ribbon
Why is the CDH Awareness Ribbon blue and pink and yellow with clouds you ask? Several years ago on our old listserv, members of CHERUBS (then the only CDH group on the internet) talked about having an awareness ribbon. We batted the idea back and forth and didn't go much further with it because it every color was already taken and it seemed a bit tacky to take a color that already belonged to other causes - we didn't want to take away from their hard work promoting their cause with their ribbon. And we didn't want to compete with other causes for a ribbon color, because well... that's not very professional.
A couple of years ago, cherub with wings, Drew, had a ribbon made especially for him that his mom put on the Rainbow of Hope site. RoH is a site dedicated to Drew's memory that has information about CDH. Jana is a sweetheart and well respected in the CDH community. Drew's ribbon is turquoise.
Last year an organization decided to 'borrow' Drew's ribbon for their own CDH ribbon. Soon this organization claimed rights to all CDH Awareness activities, events, etc - even tried to have this ribbon trademarked as their own - based on the fact that they wrote a few letters to governors for CDH Awareness Day proclamations. Because this was their project, CHERUBS respected it and stayed out of it. But soon other groups and parents who used that color ribbon or who said "Congenital Diaphragmatic Hernia Awareness Day" without explicit permission of this small group of about 35 real people were getting threatened with lawsuits. Then CHERUBS was getting threatened if we didn't stop using the term "Congenital Diaphragmatic Hernia Awareness". CHERUBS tries to steer clear of all drama - but we do stand up for CDH families. The decision was made to not use the turquoise ribbon to avoid further drama and threats from that group.
Last year, our members asked for an official Congenital Diaphragmatic Hernia Awareness Ribbon - one that was chosen by CDH families, not used by other causes and not embedded in threats and drama. All of our over 2000 members - all CDH families - were asked to recommend and then vote for the official CDH Awareness Ribbon. There were several different ideas that went around but one thing was for certain - we wanted a ribbon that represented our children, our cause - a ribbon that is owned by ALL CDH families and can be used without fear. Not something assigned to them or dictated to them, not something some politician who is clueless about CDH signed on unintentionally, but something that they chose for their children. Baby blue, pink and yellow... similar to the ribbon for birth defects and clouds for those cherubs who do not survive - because half of these children do not survive.
To us, the turquoise ribbon is Drew's ribbon and always will be... something sacred that belongs to his memory. How amazing that Jana chose to allow others to use it and how amazing she is to put up with all she has because of it.
This is not CHERUBS' ribbon. It is not the ribbon of any 1 organization or person. This is the official Congenital Diaphragmatic Hernia Awareness Ribbon and it belongs to ALL of the families and children affected by CDH.