CHERUBS New CDH Awareness Fund

CDH Awareness Fund – this fund will help raise awareness of Congenital Diaphragmatic Hernia through balloon releases, giving away free CDH ribbon buttons and brochures and other items. It will also cover advertising costs, billboards, video production and much more.

• A donation of $7 will sponsor 1 CDH Education Poster
  
• A donation of $20 will sponsor 100 CDH Awareness Ribbon Buttons
• A donation of $100 will sponsor a Balloon Release
• A donation of $400 will sponsor 5000 CDH Awareness Brochures
• A donation of $3000 will sponsor a billboard advertisement

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!

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

info@cherubs-cdh.org

www.cdhsupport.org

www.cdhresearch.org

www.cdhconference.org

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

Personalized Congenital Diaphragmatic Hernia Awareness Ribbons

CHERUBS will personalize a Congenital Diaphragmatic Hernia Awareness Ribbon for any CDH family for free.

To get a free ribbon, send your child’s photo, name and date(s) to ribbons@cherubs-cdh.org You should receive it within a week. Within 2 weeks it will appear on our cafepress shop where you can order items with your ribbon:

http://www.cafepress.com/cherubs/5842791

A special thank you to Barb Wagner and Fernanda Arce for creating the ribbons for us! We have personalized ribbons for over 100 CDH families so far!

Congenital Diaphragmatic Hernia Newsletter

We just uploaded the latest issue of CHERUBS newsletter –

http://www.cdhsupport.org/newsletter/Winter09SilverLining.pdf

Official Congenital Diaphragmatic Hernia Awareness Ribbon

CDH 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.