In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Monday, March 31, 2014

Why are there 2 "CDH Awareness Days"?

(WARNING... a bit of drama... ignore if you're dealing with enough CDH drama right now)
We are getting asked that question a lot today and we try to ignore it politely to avoid any drama but there's a lot of misinformation going around so here are the facts:

There was once one CDH charity (ours). 1 person was banned about 10 years ago. She started her own splinter charity.

They trademarked "Congenital Diaphragmatic Hernia Awareness" and "Congenital Diaphragmatic Hernia Awareness Day"

Other groups and charities formed (several with our help). Together we fought the trademark - 8 charities and many surgeons, along with 4000 others - and after 2 YEARS and lots of drama, we won. We had to fight as every time we said "Congenital Diaphragmatic Hernia Awareness" without 1 person's permission, we were threatened with a lawsuit. Yes, it was ridiculous. Yes, it's highly embarrassing to the whole community. But instead of rolling over and giving up raising awareness (which we had done for 10 years already), we fought. For our babies, we had to stand up and fight and say, "No, you will not restrict anyone from raising CDH Awareness". Court documents here (including the lawsuit threats, the ribbon, etc) -

Pretty sad, isn't it? BUT, there is a happy ending.

On April 19, 2010 the trademark on "Congenital Diaphragmatic Hernia Awareness" was removed. That is why that day is the International Day of Congenital Diaphragmatic Hernia Awareness. It's a celebration and a remembrance that CDH Awareness belongs to everyone. We fought very, very hard so that YOU, me, all of us and every charity and family could raise CDH Awareness freely without the threat of being sued and without being restricted by 1 person/charity.

There is still a trademark on "Congenital Diaphragmatic Hernia Awareness DAY" so we do not use that phrase or we could be sued. We didn't fight it to avoid more drama and division in the community. Our charity CANNOT participate in that day or we will be sued. History has shown us that.

Yes, the other group did "pick a day first" - March 31st (the day they filed to be a charity - also the same day they filed to try to shut us down but that's another story). But when you don't let all CDH families and charities participate, how is that a day for the whole community? And when you threaten others who try to raise awareness how is that not splintering the community? Starting a "charity" out of spite is splintering already. 1 person and 1 tiny group should not dictate who can and cannot raise awareness for something that has devastated all of our children and families and when and where we can raise it. So most of us decided to avoid that drama and we chose a new day - April 19th because it's not a charity day, it's the day 8 charities and 1000's of families won their freedom to raise awareness for CDH again. The ribbon was voted on by all these groups and families. We chose something different and not used by any other cause and not about 1 group or 1 child. Pink, yellow and blue for babies, clouds for hope. This won out over about a dozen ribbon designs. April 19th and the ribbon are owned by NO ONE. No trademarks, no copyrights. Anyone can use the ribbon, anyone can join in. It belongs to ALL of us.

Let me also say that our charity never spent 1 penny of donations on lawyers, etc. - all services were donated to us pro-bono. And we didn't "sue" anyone - we contested the trademark. We did this after repeatedly asking that group to remove the trademark and work together and being denied the right to raise awareness.

It's not that we don't want to work with others or want to compete. It's because our hands are tied. Why risk being sued or going through another trademark suit when we can celebrate a day that's free to everyone? We chose the no-drama, no-lawsuits, no-trademark, only goodness and celebration day of April 19th.

Since then, several new groups have popped up. A few charities have created their own days based on their founding day. Some have chosen their favorite colors to represent them. Facebook pages and groups pop up all the time with 1 child's birthstone as the "CDH Awareness Ribbon" color or their day as "CDH Awareness Day". What can we do? Yes, any awareness is great! But how many other causes have multiple ribbons and days?

Everyone talks about "working together to raise awareness" but so many want their own days/ribbons/etc.... nothing we can do.   There have been many pages / groups to pop up to even try to capitalize on this drama and label themselves the "No drama charity" - while trashing other charities, splintering the community more and you guessed it - their own color, day, etc and tons of photos of their kids.  They chastise us and the other charity as if our charity has any power here at all to force people to work together.  We stood up so THEY could freely raise CDH Awareness, helped their families and in many instances they took OUR member lists and services to start their own "charities".  No good deed goes unpunished, eh?  

All of this... splinter groups, trademarks, drama... all of it selfish and egotistical and all about "Watch me, I can do it better!  Pay attention to me!  You don't give ME what I want, I will start MY own charity to get it!  My family has suffered more than any other CDH family in history - we MUST be honored!".   It should be "Help these children!  See them, see what CDH is doing to them?!  Help THEM!  All of THEM!".   That's what it should be.  :(  

Working together means wanted to help as a community.   Not trying to compete or reinvent the wheel but seeing what is already there and trying to build on it.  10 years ago, we had that.  Before the trademark we had 9 charities - 8 fought the trademark together.  That is community.   Facebook changed all that and egos have become more important than the community.  That's just a sad fact and one we have no control to fix. 

We wish everyone would work together instead of so much division but we can't force them. Maybe one day we can all work together and sing at the same time and be louder. But to do that, everyone has to give up wanting to have a solo performance and work together. Saying all this frequently makes us a target and some would rather compete and trash us than admit their motives a bit self-motivated. But when you stand up for what's right it's never easy!

Members of the Alliance of Congenital Diaphragmatic Hernia Organizations - ACDHO-... don't just talk the talk... they walk the walk. We work together. Grassroots charities, positive motives, no splinter groups, no egos, no drama, no competition. 1 ribbon, 1 day, 1 united CDH community.

We NEVER tell our members what day(s) to raise CDH Awareness or what groups to join or not join. Our volunteers - yes, to protect our charity. Families - no. Go raise awareness every day of the year! Join every group, page, charity, fan club, etc! Do not choose sides. Do not bash anyone.

CDH isn't about 1 group or 1 day or 1 person or 1 ribbon. It's about these children who are fighting to breathe and to live every single day. It's about you families struggling to get through each day. The cause and working together should always come first. Here, it does.

So there it is. If you want to respond, ok. But please do not bash anyone. Not our charity, not theirs, not any person. Be courteous, factual and kind. Remember the rules of this group.

BTW, this post is written by just me, it's not an "official" charity post by the Boards. It's just this one CDH mom and charity leader.

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