Par & Jack Pics...(updated 11/26/11))

Monday, August 18, 2008


Many of you know that CDH (Congenital Diaphragmatic Hernia) is something near and dear to my heart since our son Par was born with this defect in November of 2007. Since his birth, I have felt that it is part of my mission/goal/responsibility to educate and support people facing a CDH diagnosis since it is such a little known defect.

My outreach is small, basically the individuals that I meet through my blog, but it is important to me.

There is currently an organization that has filed an application for trademark ownership of the phrase “Congenital Diaphragmatic Hernia Awareness”. This means that anyone (an individual or an organization) who wishes to use this phrase or its likeness, must receive permission from this organization before using it or risk being sued. While this organization has done a lot to raise awareness and show support of some families who have suffered from CDH, I think that a trademark of the phrase is irresponsible and ultimately will work to decrease awareness of CDH.

For me, this means that I would need to have special permission to have the descriptions on my blog or links to information about CDH Awareness. This means that the organization Rusty and I support, Real Hope for CDH (made up of patients/families of Dr. Kays) would also have to get permission to use such phrases. In my opinion, this is absolutely ridiculous; you cannot own a defect or awareness of it. For so many families who have suffered because of CDH, helping to raise awareness about this little known defect has become a personal passion-- a way to help heal and grieve in a healthy manner. This trademark would make that difficult or impossible for so many, at the same time limiting awareness, rather than helping to spread it.

No one owns Breast Cancer Awareness or Cystic Fibrosis Awareness, it just doesn’t make sense that an organization could own CDH Awareness either. Even if awareness is part of a campaign, it doesn’t need to be trademarked. The goal is “awareness of a defect”, not “awareness of a defect by individuals associated with a particular organization.”

If what I have said makes sense to you and you agree, please sign an online petition! This trademark application is currently before the U.S. Patent & Trademark office for review so the sooner that you sign, the better. There is also an option to sign anonymously in case you would not like your name available for privacy/security reasons. Here is the link to the petition with more information. If you have any questions, please don’t hesitate to ask me. Also, please feel free to forward this to anyone that you think may be interested.

My goal is not to be divisive about this issue or in regards to this organization. My goal is to keep “CDH Awareness” available to all of the many families and individuals who have suffered because of this defect and who wish to work towards educating and supporting people who face this diagnosis and its many effects.

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