Saturday, January 3, 2009

Congenital Diaphragmatic Hernia Awareness Trademark is UNETHICAL

Posted on Breath of Hope Incorporated's blog:

Saturday, January 3, 2009
Congenital Diaphragmatic Hernia Awareness® Should NOT go the way of Pinkwashing
There has been a whole lot out there stated about Breath of Hope Incorporated, a non-profit corporation and the trademark CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS®. Has anyone asked why Breath of Hope Incorporated has trademarked the Congenital Diaphragmatic Hernia Awareness Campaign? Instead of assuming the intent perhaps people should stop and read.

Look at the Breast Cancer Awareness Campaign. There are numerous organizations, many Pharmaceutical and Biomedical Companies that are spending how much on research for Breast Cancer? No one knows!

Then we have companies out there that are marketing their cosmetics in pink containers, their vacuum cleaners in pink and their canned soup. They promote their products that contain ingredients which raise health concerns. Yoplait encourages women to eat yogurt to support their breast cancer cause but their yogurt is produced cow’s who have been treated with rBGH an artificial growth hormone which has many health concerns and breast cancer is one of them! Then there are car companies who are encouraging consumers to buy their cars for their breast cancer campaign but the fumes from the cars exhaust may also be linked to breast cancer? These are Pinkwashers. Unwittingly, we buy them because they state a percentage will go to Breast Cancer Research? It is their marketing campaign which is riding on the backs of a cause that was started with great intentions. Think Before You Buy Pink – watch their ads, see what they state about an Awareness Campaign – in October – which was to raise awareness and research for a cancer that still affects so many women and men around the world.

Go into any retail store in October and look at how much these FOR profit companies are marketing their products. How much goes to Breast Cancer Research? A consumer could spend hundreds and perhaps one dollar might go to Breast Cancer Research. Who is making the profit there and who is benefiting? Was that what Breast Cancer Awareness was to be about? The Breast Cancer Research Stamp went on sale in 1998, it has raised more than $53 million dollars which went to the National Institute on Health and the Department of Defense Medical Research Program and we have no idea how these research dollars are being spent!

Trademarking the campaign the Day the cause of Congenital Diaphragmatic Hernia was to be sure that all work together in raising funds that will go to MEDICAL RESEARCH, education and support for families of Congenital Diaphragmatic Hernia and it would be an organized effort by all to make this happen. Not to cut out any legitimate non-profit from this effort at all. It is to be sure that Corporate America which we all now know from the news of Bail-outs and Parachute CEO Bonus’ offers obviously doesn’t know how to spend its money. Do you trust them to fund medical research? Contributions should go to the causes out there not those that are the Cause Marketers!

Breast Cancer Organizations out there even will tell you there are so many of them trying to raise money and find the cure but they are wasting funds by going in too many different directions and sometimes repeating one another’s research only to find it leads to a dead end. If someone had trademarked the Pink Ribbon, the phrases for the campaign before for profit corporations out there could do all this and assemble a certain amount of order – we might just have a cure now.

The Breast Cancer Awareness Campaign with the Pink Ribbon started to educate the public about monthly self-exams, encouraging Insurance Companies to cover yearly mammograms and raise funds to cover treatment and further research. Isn’t it a shame that Billions have been poured in what we thought were being raised for research for a cure but no one knows where that money has gone?

If one organization had copyrighted the ribbon, had trademarked the phrases of the campaign – imagine how much closer a cure might be? It wouldn’t stop other nonprofits from raising funds and providing the support for education, treatment and research in their communities or within their organization but it would have kept Corporate America and those profiting off the “cause” from doing so!

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.

Breath of Hope Incorporated is a non-stock non-profit organization incorporated in the Commonwealth of Virginia, a Public Charity as determined by the Internal Revenue Service. We must answer to the general public and our financials are available for public inspection. We will be working with a Trademark attorney and volunteer law school students to be sure that the Congenital Diaphragmatic Hernia Awareness ® Campaign will not go in the direction as the Breast Cancer Campaigns. Breath of Hope Incorporated spearheaded the Congenital Diaphragmatic Hernia Awareness® Campaign and because of this we have to be the gatekeepers to be sure that this campaign does not go in the same unorganized, frenzied direction as the Breast Cancer Awareness Campaign.

Posted by Elizabeth at 1/03/2009 02:20:00 PM


A few facts we should all be aware of:

1. CDH occurs in 1 in ever 2500 pregnancies. Breast Cancer occurs in 1 in 9 women. To compare the marketing of the two is ridiculous. To use the term "Pinkwashing" in relation to CDH is an obvious ploy to distract people from the real reasoning behind trademarking "Congenital Diaphragmatic Hernia Awareness" - which is control and greed. Millions of people know and recognize what the pink ribbon is for and it HAS raised awareness and research funds! Only a few hundred people associate the turquoise ribbon with CDH - many more associate it with the other causes it was used for before Breath of Hope took it from Rainbow of Hope's site. The OFFICIAL CDH AWARENESS RIBBON, voted on by families, is not turquoise but pink, baby blue and yellow with clouds. It is used by 1000's and no one dictates who uses it or what funds it raises because the goal of true awareness is to make people aware - not fearful. But to compare BoH's turquoise ribbon to Breast Cancer Awareness' pink ribbon is ludicrous. It would be wonderful if millions of people did recognize the (official) CDH Awareness Ribbon but that's not the case and to bully others by claiming to protect CDH Awareness from capitalism that doesn't even know CDH exists.... a shallow excuse for trademarking CDH Awareness that doesn't hold water at all.

2. Breath of Hope, Incorporated is not "protecting" the CDH Community. Elizabeth Doyle-Propst has been attacking and threatening other organizations and many CDH parents for several years - to the point of restraining order and affidavits. This is all documented, much on court records. There have been countless parents kicked off of Breath of Hope for disagreeing with her, a revolving Board of Advisors, and several mutinies of many parents leaving at once. This is not a "peaceful leader who only has CDH families best interests at heart". Again, all documented, by many, many people in several different organizations. Breath of Hope, Incorporated has caused more damage in the CDH Community and to more CDH parents than anything since Congenital Diaphragmatic Hernia itself. Out of 10 CDH organizations, this is the organization to be least trusted with something as incredibly important as CDH Awareness and Research. It is like asking Iraq to lead the U.N. - incredibly absurd.

3. To "market" CDH Awareness as if it is a business and not a birth defect, as if our babies are a commodity to be competed for.... is horrible in any reasoning.

4. 1000's of people have said they didn't want this trademark by signing the petition. Countless CDH parents have contacted Breath of Hope, Incorporated's Board asking them not to trademark CDH Awareness. Pediatric Surgeons have signed the petition. Nurses. Respiratory Therapists. Grandparents of these babies. Adult survivors of CDH. BREATH OF HOPE DOES NOT CARE what the families want or what the researchers want.

5. Breath Of Hope, Incorporated HAS BEEN TRYING TO STOP OTHER CDH ORGANIZATIONS FROM RAISING AWARENESS. Take a look at the petition site for the proof. See the attacks on CHERUBS trying to stop us from raising awareness and we are a legitimate CDH Organization and have been helping families since 1995. In fact, Elizabeth Doyle-Propst learned about CDH and received her support through CHERUBS! CHERUBS has over 2600 members and she is trying to prevent all of us from raising awareness and research funds that she believes all should belong to Breath of Hope. This is "protecting" CDH Awareness and Research?

6. Breath of Hope, Incorporated is not a research organization. Elizabeth Doyle-Propst is not a doctor and her history in other non-profits is rocky, at best. To allow one woman, with a long history of attacking CDH parents and other organizations to police CDH research when she has no legal, moral or ethical right to do so, is ridiculous.

We are glad Ms. Doyle-Propst has such a high opinion of herself but we would like to know who exactly, put her in charge of the all the world's CDH awareness and research? Because it was not the doctors or families dealing with CDH. It was a self-appointment of 1 woman who is working very hard to try to stop other CDH organizations from researching and raising awareness. Do the doctors now know they must ask her permission to raise CDH research funds?

Is this post by Elizabeth blatantly calling all other CDH organizations and researchers thieves? We have laws we must follow. We have guidelines we must follow. We are doing so. And we are being ethical as well. We are putting the families and whole community first. We want there to be as much CDH Awareness and Research as possible. We are not trying to control or restrict anyone. Because 8 organizations and 3 CDH clinics arre doing something Breath of Hope, Incorporated and Elizabeth Doyle-Propst are not doing - putting CDH families first.

You can spin it any way at all to try to cover the real reasoning for trademarking "Congenital Diaphragmatic Hernia Awareness" but it is still WRONG.

CDH Awareness belongs to everyone. And the United States Patent and Trademark Office will agree. When that happens - THAT day will be CDH Awareness Day - the day CDH Awareness was given back to the families and researchers.

THAT day will be CDH Awareness Day - the day CDH Awareness was given back to the families and researchers.

If you have not done so already, I urge you to sign this and pass this link on. Post it. Forward it to everyone in your e-mail address book. Our children's rights, memories and futures should not be treated as a commodity. Our children deserve better.

Dawn Williamson
CHERUBS President & Founder

From Darlene, one of our Advisors..... .who makes excellent points! :

"She blasts "corporate america", yet her organization is
incorporated, so she is part of corporate america. Bottom line
is she wants an exclusive monopoly on CDH awareness. She has
offered not one argument in support of her qualifications as the
"gatekeeper" of CDH awareness. Being that she is a
self-appointed monarch, who will police her?"

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