The History of the Official Congenital Diaphragmatic Hernia Awareness Ribbon

The first awareness ribbon or bracelet for CDH was discussed on CHERUBS old listservs in 2004. Because all the colors are taken, we didn’t want to impede on any other cause’s ribbon or their awareness efforts. Besides, we widely used the “cherub” as our awareness symbol for CDH. We tossed the idea around and talked about it with CHERUBS members but there was no real desire to join in on the awareness ribbon bandwagon.


The very first awareness ribbon for Congenital Diaphragmatic Hernia was a turquoise ribbon created in memory of Drew Lewallen in May, 2006 and posted on Rainbow of Hope. Many of us feel that this is Drew’s ribbon – and it is. Permission to use this ribbon on a larger scale for fundraising for 1 organization only and ownership of this ribbon was never given and copyrights belong to Drew’s family.

Because of awareness issues now associated with another organization’s co-opting of Drew’s ribbon and trying to trademark it (twice), most families refrain from using the turquoise ribbon. Most families affected by Congenital Diaphragmatic Hernia view wearing turquoise or a turquoise ribbon as endorsing the trademark and helping to fund and encourage a corporation’s bid to profit off their babies’ pain and suffering and control awareness of this devastating birth defect. Many families do not want to be walking, talking billboards for something that they find morally and ethically wrong.

The Congenital Diaphragmatic Hernia community needed an awareness symbol that was free, not tainted with any ulterior motives, owned by no one and chosen by CDH families. We also wanted something that belonged to just the CDH community and not several other causes. The turquoise ribbon happens to also be used by many organizations and the public for Addiction Recovery, Lymphedema, Native American Reparations, Sexual Assault, Ovarian Cancer, Anxiety Disorders and more.

We are nothing if not original at CHERUBS and ethically, we could not have used a ribbon color that belonged to another cause or was copywritten by Drew’s family. Besides, these CDH babies are so special that they deserve an original awareness ribbon all their own – so we came up with several ideas for an original awareness ribbon.

Members of several organizations voted for many days and a decision was made. The official congenital diaphragmatic hernia awareness ribbon, as voted on by CDH parents and survivors, is baby blue, pink and pale yellow with clouds.


This is the Congenital Diaphragmatic Hernia Awareness Ribbon recognized by the members of the Alliance of Congenital Diaphragmatic Diaphragmatic Hernia Organizations. Is it recognized by CHERUBS, the world’s first and largest CDH organization with over 2800 members in 38 countries. It is the ribbon associated with the Congenital Diaphragmatic Hernia Research Study.
Wikipedia recognizes this ribbon. There is even a postage stamp with this ribbon, created February 12, 2008. Not to mention 1000’s of items with this ribbon available on our stores and various other sites.

And now, there are personalized Congenital Diaphragmatic Hernia Awareness Ribbons:

If you would like one, please e-mail your child’s photo, name and date(s) to ribbons@cherubs-cdh.org and Fer and Barb will make your ribbon as soon as possible.

Some parents are even wearing their CDH ribbons as permanent tattoos:


The Official Congenital Diaphragmatic Hernia Awareness Ribbon is on 1000’s of web sites, including those belonging to CDH organizations and the CDH Blog Ring.

We are putting together a project about the Official Congenital Diaphragmatic Hernia Awareness Ribbon and would love to use your photos. Please send in photos related to this ribbon, whether it’s you wearing a hat with the ribbon, or your tattoo or standing beside your car magnet or beside your cherub’s NICU bed with a ribbon posted beside it. Please send them to ribbons@cherubs-cdh.org

We are also putting together a list of all the web sites that post this ribbon. If your web site is posting this ribbon please comment to this blog post with the URL to your site.

And feel free to comment and tell us how you are using this ribbon!

“I Own Congenital Diaphragmatic Hernia Awareness” Video

Starring over 300 CDH families in the fight against the trademark on “Congenital Diaphragmatic Hernia Awareness” filed by Breath of Hope, Incorporated.

http://www.ipetitions.com/petition/cdhawareness/
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
http://www.cdhsupport.org
http://www.cdhresearch.org

Legal Happenings At CHERUBS

Hi Everyone,

I wanted to update you on CHERUBS legal happenings….

CHERUBS had a pro bono attorney for the personal restraining order I had to take out against Elizabeth at Breath of Hope in 2006 I believe. Long story, not going into that as that’s not what this post is about.

CHERUBS had 3 pro bono lawyers from 2 law firms helping us on the trademark and a few additional tossing us advice here and there. HUGE help! But 1 law firm doesn’t have the manpower to give us anymore and the other is about to take over a much bigger project for us.

So that leaves me to deal with the trademark issue legal stuff alone. And to be honest, I have no clue what I’m doing. The stress of having 1000’s of people depend on me and CHERUBS to protect Congenital Diaphragmatic Hernia Awareness is enormous. I don’t want to mess this up. I need help. If you know of a trademark attorney who will help us, please let me know. They can be in any state as this is a federal issue. Please help if you can – these babies deserve to have the best representation to protect their rights. I am not that person to do that job, I am not qualified and I will not post that I am a legal expert or I am so intelligent that I don’t need a lawyer. I am bound to make some mistakes doing this alone (well, not alone – our Board is a huge help!), but we cannot afford to make mistakes. Taking on a trademark is not a small thing at all. This trademark is a huge ordeal, one that has to be stopped.

So that leads me to another notice. I will be taking down the timeline for a while. I will not be posting about any legal issues. I will no longer be keeping you updated on Elizabeth’s attacks or false allegations, slander, filings against CHERUBS with various agencies, etc. If you want updates on the trademark, you can go through the petition site to see the updates at the USPTO. Why, you ask?

For the first 3 years all this was going on, we kept quiet about it. Ignoring it did not help matters, it only enabled her and made her bolder. It got worse, so much worse that the restraining order was filed.

Then we went public, because other CDH parents were now being attacked and Elizabeth was filing accusations to try to have CHERUBS shut down. That was 2 years ago. You all have been pretty updated since.

But now, I am stepping back on the legal stuff and handing it all over to our new 2 pro bono lawyers to deal with. Whatever they deem necessary to do to stop the attacks, they have our blessing. Any court proceedings, filings, government intervention, criminal charges, etc – they have our blessing. 5 years of this is enough. It’s time to deal with this all once and for all and let the CDH community have some peace. We can’t thank our new lawyers enough, they are angels to help the CDH community this way!!!

And we can get back to supporting families dealing with Congenital Diaphragmatic Hernia and stop dealing with all Elizabeth’s drama and attacks. Too many CDH parents were put under the impression that CHERUBS is only about drama and stopping Elizabeth. That couldn’t be farther from the truth…. our site is drama free, we offer dozens of free services, the most CDH information on the net and with over 2700 families we offer the most support! 🙂 We’ve been here for 14 years with only one goal – helping families affected by CDH.

Now, we still have the trademark issue to deal with!!! I am still working on that video and we will release it this week. At the least, it will raise awareness! But we still need a lawyer! If you know a lawyer or you really want to help and just call lawyers and ask them to help us…. we would appreciate it so much!!!

Formal Letter to Breath of Hope, Inc. Requesting End To CDH Awareness Trademark

On February 24, 2009, the following letter was sent to the Board Members of Breath of Hope, Incorporated. It is our formal attempt to end this trademark issue peacefully and to request that their organization do what is best for all families affected by Congenital Diaphragmatic Hernia.

This is our effort to resolve this particular issue and end this trial and to save the entire CDH Community 2 years of USPTO trial dates and to use our time and resources to better help CDH families.

The trademark trial is continuing, and will go forward, unless Breath of Hope, Inc. decides to resolve this issue.

What happens next is up to Breath of Hope, Inc and it’s Board Members.

——————————————

Ms. Doyle-Propst,

This communication is only for mediation purposes of attempting to resolve the “Congenital Diaphragmatic Hernia Awareness” trademark issue. For the sake of having a peaceful dialog, we will keep this letter to the point and not comment on any other issues. We hope that you can do the same and help us to find a realistic and positive solution to this trademark issue.

The trademark on “Congenital Diaphragmatic Hernia Awareness” has been extremely detrimental to the entire CDH community. The “pinkwashing” excuse has failed to give any valid reasoning of why Breath of Hope, Inc. has filed the trademark on “Congenital Diaphragmatic Hernia Awareness”. The idea that anyone could own “Congenital Diaphragmatic Hernia Awareness” has deeply angered the majority of the CDH community, as it has hindered Congenital Diaphragmatic Hernia Awareness itself. Nothing good has, or could, come from this. It is our sincere hope that you will do what is best for the entire CDH community and remove this trademark.

CHERUBS, and several other CDH organizations, do not feel that we should have to ask permission from you or Breath of Hope, Inc. to use a common term that we all use daily. To ask us, CDH families and researchers, to do so can and will only hinder progress of spreading Congenital Diaphragmatic Hernia Awareness. If you have not already read the comments at http://www.ipetitions.com/petition/cdhawareness we would like to ask you to do so. You can also read the comments at http://www.facebook.com/group.php?gid=56377210497.

Over 5700 CDH families, survivors, friends, pediatric surgeons, nurses and others have asked to stop this trademark – including many members of Breath of Hope, Inc (with some being past board members). It is from this group that we will pull witnesses that will tell the United States Patent and Trademark Office that “Congenital Diaphragmatic Hernia Awareness” is a common term.

On behalf of myself, CHERUBS and 1000’s of CDH families and medical staff, I would like to formally ask you to drop the trademark on “Congenital Diaphragmatic Hernia Awareness”. We all hope to work together to reach an agreement and better the CDH community.

If you agree to do so, we will agree to refrain from filing a Petition to Cancel on the “Congenital Diaphragmatic Hernia Awareness Day” trademark, even though we believe that every CDH family should have the right to participate without asking permission, being threatened or forced to give funds to Breath of Hope, Inc. We are all aware of your desire to own and control “Congenital Diaphragmatic Hernia Awareness Day” from other CDH organizations and, as an olive branch, are willing to allow the trademark for the day in lieu of the trademark on “Congenital Diaphragmatic Hernia Awareness” itself.

As always, all CHERUBS wants is for CDH families to have the support and information that they need, and to encourage Congenital Diaphragmatic Hernia awareness and research. We understand that this is the goal of all CDH organizations. We ask that you will reconsider this trademark and focus on doing what’s right for families affected by Congenital Diaphragmatic Hernia, and furthering the support that Breath of Hope, Inc gives. It is not our wish to hurt you or Breath of Hope, Inc. We simply have asked for this trademark to be canceled and the term “Congenital Diaphragmatic Hernia Awareness” returned to the community who has been affected by Congenital Diaphragmatic Hernia.

Sincerely,
Dawn M. Williamson
President & Founder


CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
3650 Rogers Rd, #290, Wake Forest, NC 27587
919-610-0129
815-425-9155 Fax
CC – CHERUBS Parent Advisory Board, Breath of Hope, Inc. Board Members, United States Patent & Trademark Office File
BCC – CHERUBS Legal Team, CHERUBS Medical Advisory Board, Members of The Alliance of Congenital Diaphragmatic Hernia Organizations

What YOU can do to make a real difference for these babies and CDH. Help ALL these babies and organizations in just 3 minutes for free!

Reminding everyone to sign who hasn’t signed! Proceedings start tomorrow! http://www.ipetitions.com/petition/cdhawareness/

On a sidenote, a few legal blogs have written articles on this so that’s some awareness! Not necessarily the positive CDH Awareness we would have wanted but awareness none the less. And every one of those articles (written by TM lawyers) agree that the trademark is insane, unethical and doesn’t stand a chance. Even the comments to the articles agree. So do over 5000 CDH families, friends and medical professionals and now 9 CDH organizations. This is all a lot of wasted time and a lot of wasted donations by Breath of Hope, Inc (CHERUBS has not use any donations to fight this trademark). CDH families should come first – always – and this trademark never should have been filed.

It’s a shame that Elizabeth Doyle-Propst and Breath of Hope, Inc are forcing the CDH community to go through all this but at the end, CDH Awareness will belong to ALL families, researchers and organizations again and no one will ever be able to trademark it. So this is all worth it to keep CDH Awareness safe and for awareness to continue to lead to more research.

What can you do today that will help ALL babies affected by CDH? That raises awareness all year round? That will allow millions to raise CDH Awareness without being restricted by 1 day or 1 organization or 1 person?

Sign the petition if you haven’t already.

http://www.ipetitions.com/petition/cdhawareness/

Forward it to family and friends and especially other CDH parents so they are aware and have the opportunity to sign too. Post on your blogs, other forums, listservs, sites, carepages, etc.

And say a prayer that this goes smoothly and without a lot of unnecessary drama.

Why CHERUBS will *not* be participating in Congenital Diaphragmatic Hernia Awareness Day

Because of the legal and ethical issues behind “Congenital Diaphragmatic Hernia Awareness Day” and the fact that proclamations gathered by CDH families for this day were used in the registering of the “Congenital Diaphragmatic Hernia Awareness” trademark, CHERUBS gracefully chooses to decline to support this event.

http://www.ipetitions.com/petition/cdhawareness/

We respect the rights of our members and all CDH families to celebrate CDH Awareness on March 31 but in good conscience, we can not support this event or the organizations behind it.

Instead, CHERUBS chooses to support CDH families and awareness every day, by everyone. Freely. CHERUBS wishes to support the organizations and families who work hard, all year round, to stand up for our children and make sure that their rights and their memories are respected:

CHERUBS Australia
CHERUBS UK
Kays Kids
Jack Ryan Gillham Foundation
Little Lambs
Olivia Raine Foundation
Rainbow of Hope
CHERUBS

Let’s all show our support of these babies and the organizations and medical care providers who work hard to protect them and help them all year round.