On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Diaphragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It was resubmitted without the logo and went onto the supplemental registry on September 17, 2008. Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening correspondence to other Congenital Diaphragmatic Hernia (CDH) support organizations and families who used the term “Congenital Diaphragmatic Hernia Awareness.”

This story has received little press, apart from some coverage on BoingBoing and TechDirt. (Hey, Wired Danger Room! Still worried about the Pentagon’s mind control rays? Why don’t you lose the tinfoil hat once in a while, Noah.)

A few words about Mrs. Propst. Mrs. Propst lost her daughter Cecilia to complications arising from a CDH in 1999. She then volunteered at CHERUBS, one of the first online communities for parents coping with the effects of CDH on a child, and seemed to be just what the organization was looking for. Soon however, her increasingly erratic behavior led to a series of conflicts that began to affect the entire CHERUBS online community. Mrs. Propst eventually quit the CHERUBS community, but bizarrely, she began attempting to reenter the site under a variety of alias personas. She has generally been unceasing in her attempts to attack the CHERUBS website, even going so far as to hire “professional” hackers to carry out denial of service and malware attacks. You can read more about the whole sordid mess here.

The latest outrage is, as noted above, an attempt to copyright a phrase commonly in use. Her rationale is as follows:

“Breath of Hope, Incorporated has been criticized for the trademark which was done to protect the campaign from being marketed by Corporate America. What Breath of Hope did was have the foresight to make sure that the families and children who have been affected by CDH are not being profited on and the funds raised through the Awareness Campaign will go to education, research and possibly a cure one day. In order to use marks from a company, individual or an organization – you can obtain license to do so. This is to protect the mark. When other nonprofits request the use of the mark the license and guidelines will explain how it is to be used so Congenital Diaphragmatic Hernia Awareness® doesn’t go the way of pinkwashing. Any other non-profit out there that benefits families, encourages research or truly makes a difference for this birth defect that occurs just as often as Spina Bifida, Cystic Fibrosis and Downs Syndrome will freely obtain a license which will protect this campaign and those that have been affected by congenital diaphragmatic hernia the birth defect.”

Ooooh! Watch out – Corporate America is out to screw over disabled children! Thank goodness we have someone like Mrs. Propst to protect us all. <Sarcasm off.> Just who is she to determine what organizations are worthy enough to be “licensed?” Based on her “Fatal Attraction”-type behavior, do you think CHERUBS will get a license? Somehow I doubt it, just as I doubt that any “licenses” she deigns to grant will be “free” in any sense of the word.

On December 4, 2008, CHERUBS filed a “Petition to Cancel” with the United States Patent and Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”. According to the website:

”It is our goal, along with 7 other CDH organizations and over 4000 CDH families and medical care providers who signed an on-line petition, that this trademark be canceled so that all people affected by Congenital Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Diaphragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect. Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and persons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH families and to fight for their rights to raise awareness.

”It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to cancel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organization for families affected by Congenital Diaphragmatic Hernia.”

As you may have guessed (and those of you who know me already know), we have a child who is a CDH survivor; therefore this whole situation is somewhat personal for us, and many others. In fact, my wife and I were recently banned from the CHERUBS website, despite over four years of membership simply because our IP addresses are geolocated closely with Mrs. Propst’s (we recently moved). Her unceasing attacks – despite several restraining orders and charges of cyberstalking - on the CHERUBS site are definitely having an affect: mostly on people innocently seeking community in face of grief or mortal fear for their child; people trying to come to grips with what seems like the gross unfairness of fate. Mrs. Propst should be ashamed of herself. She is not the first, last or only parent to lose a child to CDH, and her bid to copyright a commonly used phrase is nothing but sheer malignant narcissism and greed.