Group wants to own trademark on "awareness" of a rare disease

Shawn sez, "Congenital Diaphragmatic Hernia (CDH)is a rare but serious medical condition that dramatically impacts the families of children born with it. Breath of Hope, Inc, a CDH association, recently filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase 'Congenital Diaphragmatic Hernia Awareness.' If successful, their trademark would prevent other CDH support and research organizations from using the term Congenital Diaphragmatic Hernia Awareness in their literature and in their fundraising efforts. Not only is it absurd to trademark awareness of a medical condition, but it's also disturbing that one organization would attempt to compete rather than cooperate with other organizations that serve the same families. A group of CDH organizations has started a petition as part of their efforts to prevent Breath of Hope from receiving their trademark."

Petition Against Congenital Diaphragmatic Hernia Awareness Trademark Ownership (Thanks, Shawn!)


  1. To their credit, through this mind-boggling copyright claim they have raised, I’ve been made aware of CDH.

  2. I went looking for the dirt that the CEO is a multi-million-dollar compensated exec and the company is trying to secure their charity “market share,” but I found none — the charity has apparently no pain employees at all, only volunteers. So why are they doing this? Are they just idiots?

    The Facebook group lists many instances of copyright claims and take-down notices by the organization, btw.

  3. This may simply be a case where the organization is concerned that someone else might try to trademark the term for exclusive use, so they are filing a trademark pre-emptively. It’s actually a fairly counterproductive and foolish way of approaching such things from a legal perspective, but it has been done before. I’d say that, shy of their actively attempting to enjoin others from using the term, there’s no reason to assume that this organization is doing anything to be particularly suspicious of.

  4. I have a hard time believing that they’d get anywhere with that application: how is it anything but 100% descriptive (meaning you can’t trademark it)?

    Seems more like their lawyers put one over on them, to bump up the billable hours.

  5. It doesn’t stop them from using it in their literature. Read up on trademark law. It just means that noone else gets to use that brand for raising money or selling goods. It doesn’t mean they can’t use a sentence like “raising awareness of Congenital Diaphragmatic Hernias” or such.

    As long as it’s a legitimate charity I don’t see what the fuss is all about. People tend to greatly exaggerate the extent of the legal protections trademarks give, and this seems to be another example of that.

    Registering a trademark is a sane and normal thing for _any_ organization to do. You don’t want another company selling goods under your name, and in this case, you most certainly don’t want some fraudsters using the name of your charity.

  6. My daughter was born with CDH and passed away 3 months later. I know a lot about this birth defect. I also know the groups being discussed.

    To Mark: the organization is not doing this for any reason other than malice.

    The woman behind this trademark is very disturbed and using the trademark system to harass and threaten these families. I have been a victim myself.

    Her name is Elizabeth Doyle-Propst and you can read about her all over the web.

    This is a case of one unstable grieving mother going over the edge and using the government to hurt and attack other people. This includes other grieving parents.

    She has attacked me in e-mail and many of my friends who are parents of babies born with CDH. She has called us stupid, uneducated, sheep, liars and bad parents for not agreeing with her.

    She hurt one mom so badly she ended up in the hospital. She told one mom that her children didn’t exist.

    You would be appalled at all the horrible things she has done to the leader of another organization who happens to be a grieving mom too.

    The only reason for this trademark is give her more ammunition to hurt others. She is already threatening people with it.

    Please sign the petition. This woman has to be stopped.

  7. The trademark is registered so it did get through the system.

    It is trademarking the name of a birth defect with awareness. This is comparable to trademarking Cancer Awareness or AIDS Awareness and not allowing any other entity to use it.

    There is no other trademark on the registry that trademarks the awareness of a health issue. Absolutely none at all for any disease. Breath of Hope Incorporated has set a very horrible precedent.

    Other organizations are fighting this to cancel the trademark and stop the harassment. This movement is being led by a woman from North Carolina who runs Cherubs and lost her own child to CDH. Cherubs was a life saver to me and many other families.

  8. I want to trademark the word trademark so anyone applying for a trademark or using a trademark is going to get a Cease and Desist letter and a lawsuit. Then, I will kick their puppy.

  9. The trademark is registered so it did get through the system.

    That’s disgusting and makes no sense whatsoever. You’d think there would be safeguards in place to prevent this sort of thing from getting this far.

    I just signed the petition and hope that this madness will quickly be a bad memory.

  10. “the company is trying to secure their charity “market share”

    I’ve worked with non-profits and they often get pro-bono work from pig lawyers. This is the result.
    I bailed on a conference call where a piggie lawyer wanted to get rid of all the open source software because it was “communist”.

  11. #3:

    I’d say that, shy of their actively attempting to enjoin others from using the term

    From the Facebook page I linked, it looks like they were apparently trying to do exactly that. It cites a number of take-down-type emails sent to CHERUBS, which seems to be a legit non-profit charity.

  12. US trademark law is so nutty, they’ll probably get it. Near as I can tell you apply, they’ll give it to you even if it’s illegal for you to hold it. They’ll just gie it to you and send a letter telling you it’s illegal for you to have it.

  13. This is an interesting article with some really passionate comments. The picture of the really cute baby piqued my interest in the article and made me read it. Pictures of cute babies get people’s attention.

  14. with a nod to lucifer (of course!), i’d like to trademark the word trademark just to get a piece of this ridiculous action (then BUY ALL PUPPIES, just to kick)!

  15. What is missing from the discussion, and leading to a lot of written hysterics, is an important fact: the mark is registered on the SUPPLEMENTAL REGISTER. IOW, the USPTO recognized that this mark is descriptive of the services, namely “Promoting public awareness of congenital diaphragmatic hernia; Public advocacy to promote awareness of congenital diaphragmatic hernia.”

    Read up on the Supplemental Register and why being sent there is basically considered not having much, if any trademark rights:

    From a trademarking point of view, this is not really “get[ting] through the system.”

    For example, “Registration on the Supplemental Register does not confer any additional rights on the holder of a mark beyond those provided by common law.”

    This should not be considered a defense of what they’re doing. Rather, I’m trying to highlight the fact that the USPTO is not aiding and abetting their efforts. Moreover, they can try, but it doesn’t mean anything, for them to say they registered the trademark (on the Supplemental Register).

    “Seems more like their lawyers put one over on them, to bump up the billable hours.”

    Attorneys were not involved in any of these filings, based on the USPTO’s record. Elizabeth W. Doyle-Propst, the CEO, signed everything. Based on a review of the filings, I see no reason to doubt that this was all on her own initiative.

  16. The REAL issue is this: How many technicolour ribbons can exists and STILL have people identify the colours and cause ?

    Now what..there’s little cloud icons on the ribbon, because the Pre-Natal Fistula Awareness org already took pink/blue style ?

    People.. unless you are Yellow for troops, Pink for breast cancer, then stop polluting car bumpers with your silly ribbons. They mean nothing in a sea of meaningless.

    1. People.. unless you are Yellow for troops, Pink for breast cancer, then stop polluting car bumpers with your silly ribbons.

      I believe that red ribbons for AIDS awareness actually started the (admittedly annoying) trend.

  17. @6, Alex M:

    Except they didn’t trademark the name of the charity. They trademarked awareness of a disease. If their charity was called “Congenital Diaphragmatic Hernia Awareness” then we might be getting somewhere.

    Interesting that it’s only on the supplemental register – though it does seem that they can still sue for trademark infringement. Which would seem to imply that if any other CDH disease tries to make up, for example, t-shirts or bracelets or those stupid car magnet ribbons that say “Congenital Diaphragmatic Hernia Awareness” on them in order to raise money, they couldn’t. Of course, I am not an IP lawyer so I really have no clue, I’m just guessing. Still sounds pretty f’d up, and it sounds like the woman who runs this charity is a bit of a nutbar, to boot. I can’t imagine any valid reason for a charity to register the term “ Awareness”, other than to harrass other charities.

  18. She is a nutbar Alex. This was posted to the petition site today

    1/8/08 – Breath of Hope, Inc and Elizabeth Doyle-Propst file false charges against CHERUBS with PayPal and several false federal allegations with government agencies.

    1/4/08 – Breath of Hope, Inc and Elizabeth Doyle-Propst continue to send threatening e-mails to CDH families, CDH web sites and filing false charges against them.

    1/3/09 – Breath of Hope, Inc issues a statement on their “reasoning” behind the trademark, going back on their word not to “police” it’s use but now stating that other organizations, researchers and individuals must get their permission to raise CDH Awareness and Research Funds. This statement has been posted in it’s original format on CHERUBS blog at

    12/29/08 – Breath of Hope, Incorporated files to own the trademark to “Congenital Diaphragmatic Hernia Awareness Day”, after registering “Congenital Diaphragmatic Hernia Awareness” despite the protests of 1000’s.

    11/17/08 – A formal complaint was made to by Elizabeth Doyle-Propst from Breath of Hope, Inc. to have CHERUBS on-line fundraising store removed or altered and our CDH Skateboard Campaign removed.

  19. I tried to post some links but somehow I am not doing this correctly.

    There has been an update posted on the petition site.

    She is a nutbar.

  20. Wow, thank you for posting this and thank you for the support everyone! We really appreciate it and your signatures on the petition. I guess there is a positive that we’re raising awareness of CDH, even if it’s because of such a negative reason.

    We appreciate your help – please keep the signatures and support coming – these babies sure need it!

    Dawn Williamson
    President & Founder
    CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

    aka CDH group trying to stop this trademark

  21. Couldn’t copyrighting the name of a disease be considered reckless endangerment of people with the disease who are seeking information and are either unable to find it because the source holding the copyright is difficult to find or they don’t feel they can trust the information from the source holding the copyright because there’s nothing else mentioning the disease to back it up?

    I’m not saying that would be allowed to happen, but if you’re trying to make a case, it seems like most copyright issues involve all kinds of theoretical “what if” bullshit. Even if the copyright doesn’t hold water in court, there’s no reason someone in the process of dying from a disease should have to spend any of their hours of dying in a courtroom because they wanted to speak publicly about their condition.

    It seems like back in the day, people would get assassinated for pulling a stunt like trying to get exclusive rights to the name of a medical condition. Paolo Passolini was assassinated for making a pretty fucked up movie, so why shouldn’t Elizabeth Doyle-Propst be assassinated for filing for a pretty fucked up copyright?

    (Not to imply, of course, that anyone SHOULD be killed over anything ever, I’m just slightly dumbfounded by what people are willing to sit idly by and tolerate these days, and what that’s making assorted jackasses such as this nutbar feel like they can get away with.)

  22. 3 guess on who posted that. And another 3 on whether half of that is true or not.

    And that is what we have been dealing with for 4 years.

    Like I said, these babies and families can use all the help we can get to be protected from that craziness.

    Thank you for your support everyone!

    Dawn Williamson
    President & Founder of CHERUBS
    An organization I am proud to sign my name to and one that has been helping these families since 1995. Without trademarks.

  23. @ 25

    I’d be really interested in knowing exactly what ‘written material’ CHERUBS could possibly steal from your site:

    The Breath of Hope INC. website consists of 5 pages talking solely about Breath of Hope INC and how to send donations. Only a single 15-line paragraph vaguely explains what CDH is along with a couple of statistics and 9 links to outside sources for further info.

    Real helpful stuff. Did you Google the info yourself?

  24. TM lawyer here. A_B has it right. The value of a mark on the supplemental register like this one is very low. This alleged trademark is merely descriptive of the condition and therefore is entitled to little if any rights as a mark. Anyone receiving a C&D letter should respond skeptically if at all.

  25. @27

    It’s useless to waste your time arguing with that woman, she is ignorant and self-serving. So many of us have tried to have a normal conversation with her but it is impossible.

    It’s best to use your energy to help Cherubs and Dawn fight this. If you have resources or connections send them to them.

    Dawn is asking us to post links to the petition anywhere possible to gain signatures.

    As a mom of a CDH baby let me also say that Elizabeth’s statistics are incorrect. Dawn posted a blog on the comparison of CDH and Breast Cancer and how flawed it is.

    Hell hath no fury like a mentally unbalanced grieving woman scorned.

  26. @ CDHmom

    It’s best to use your energy to help Cherubs and Dawn fight this. If you have resources or connections send them to them.

    I already sent earlier a little e-mail campaign to everyone I know… Unfortunately, I’m not that ‘social’ so I’m afraid it’s not a big crowd, but I hope it’ll help :)

    And, yeah. She does sound like a basket case. But I couldn’t resist ;)

  27. Yeah I think this whole thing is sad. I agree though it has raised awareness… man I hope the word awareness is not trademarked I don’t know the special character for the trademark symbol.

  28. I have to agree with CDHmom on everything she said. Thank you CDHmom!!!! Thank you, everyone!!!! Yes, please do send us any help or connections you can that will help us to put a stop to this nonsense.

    We would so appreciate you posting the link to the petition on your blogs, sites, news articles, Myspace, Facebook, e-mails to family and friends…. anything and everything to get the word out and to raise Congenital Diaphragmatic Hernia Awareness and awareness of this horrible trademark. Please also continue to sign the petition – you all have been wonderful with all your signatures and support!!!

    On behalf of our organizations and over 2600 families and doctors dealing with CDH – thank you so very, very much for your help and support!!

    Mrs. Dawn M. Williamson
    President & Founder of CHERUBS
    mom of Shane Torrence (1/28/93-9/11/99) lost to CDH

  29. I believe that red ribbons for AIDS awareness actually started the (admittedly annoying) trend.

    But the ’70s popular song is called “Tie A Yellow Ribbon ‘Round the Ole Oak Tree.” The symbolism of the yellow ribbon for a loved one who is in the military actually dates back to the early twentieth century, according to Wikipedia. This predates AIDS awareness by a significant margin. The modern popularization of the symbol came during the Iran hostage crisis in the late 1970s (although this was technically a misappropriation, since the hostages weren’t in the military).

    The red ribbon as a symbol for AIDS was invented in the early 1990s and was probably inspired by the surge of yellow ribbons being displayed for the Gulf War.

  30. My favorite car “ribbons”:

    My son’s english teacher: white ribbon, text says “I support meaningless sloganeering”

    Some guy on the highway: red-white-blue ribbon, text says “I support the guy in Taiwan who makes magnetic ribbons”

    My friend Red: green, large text “EARTH FIRST” small text “we’ll strip mine the other planets later”

    These ribbon things are the ultimate triumph of style over substance; it’s quite literally the least you can do to support some cause, yet at the same time they are an icon of self-righteousness.

    I support the troops more than you do!!! I feel for the people with AIDS more than you do!!!

  31. Typical example of how many of these charities are little tin pot empires with agendas of their own.

  32. I was born with this congenital defect in 1970, back when the chances of survival were very low. Raising awareness seems like a good idea, but trademarking a seemingly obvious turn of phrase is not the way to accomplish this. I’m saddened to see this devolve into a pissing match between two organizations which ought to be focusing on their true missions.

  33. Anonymous – it’s not a match between two organizations. It’s 1 organization who has now registered 2 trademarks and 8 other organizations who are fighting for their, and CDH families, rights to raise awareness.

    I thought I would also post an update:

    Breath of Hope, Inc has filed a response to the Petition to Cancel. Elizabeth Doyle-Propst is representing herself. The response has some blatantly untrue statements, which you can see by the evidence posted on the (internet) petition site.

    CHERUBS offered to just give her “Congenital Diaphragmatic Hernia Awareness Day” (the 2nd trademark she filed just last week) – but she wants both. Nevermind over 5500 CDH families, doctors, nurses and friends have signed stating they do not want this – including many Breath of Hope members and ex-Board of Director members.

    But she wants both.

  34. This article is a bit misleading.

    Trademark law does not give a right to exclude all uses of a phrase especially uses in common speech. Most likely the USPTO refused to register the mark on the Principal Register and they put in on the Supplemental Register. In order to protect the mark they would still have to show that the public equates the phrase ‘CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS’ with that particular group. As the outrage would suggest, the public doesn’t and so long as they don’t, it won’t get out of the Supplemental Register.

    In short. This is a non-issue.

  35. This should be a non-issue. However, Breath of Hope has been using their “trademark” to intimidate other charitable organizations and has successfully brought consequences to those organizations through misrepresenting the content of their trademark. BOH has made claims of copyright infringement to various companies (such as Yahoo, Cafepress, and more) against the other charitable organizations, resulting in the organizations being dropped from service, etc. These may be false claims, but they have had real, and harmful, results.

Comments are closed.