Saturday, January 31, 2009

Congenital Diaphragmatic Hernia Research

CHERUBS works with many CDH hospitals to help with research! Whether it's Boston Children's Hospital taking medical samples at our conference or collaborating with The CDH Study Group on our databases - CHERUBS makes a difference in CDH research!!!

And in 2009 we will make even more of an impact!!!! Our CDH Research Site will allow researchers from around the world to tap into the largest long-term CDH research database! Not just 1 hospital or doctor will benefit but ALL of them will!!! All CDH organizations will be able to use our data. And ALL CDH families from around the world will be able to participate!!

The whole CDH community is so very excited about this project!!!

We are almost halfway to our funding goal! Please donate if you can!! The research site will be live by April 15th!

CHERUBS & "The Jammies" working together on kid's CDH song and book!!!

CHERUBS is proud to work with the children's music group, "The Jammies" to collaborate on a children's song and book about Congenital Diaphragmatic Hernia!!!

We are tickled beyond belief to be able to work with 2 great guys - one of which has a cherub of his own! A book about CDH on a child's level to help explain things to young siblings and survivors has been needed for so long! We are so excited that there will be a song as well!!!

We hope to also have them perform at our 2009 CHERUBS CDH Conference in San Antonio, Texas in July!

We're currently looking for sponsors to cover these projects - please let us know if you are interested in helping us!

Kohl's Department Store & CHERUBS

CHERUBS is proud to announce that Kohl's Department store is sponsoring us with a grant, a volunteer staff for a day and several projects throughout the year!!!!! 2 different stores have adopted our organization and the entire district has pledged to help us this year with several events!!!

Thank you Kohl's for helping CDH families!!!!!!

Churches for Cherubs - Day of Prayer & Education for CDH on May 17, 2009

On May 17, 2009 we invite all houses of worship, clubs and organizations to join us in raising Congenital Diaphragmatic Hernia Awareness!!!!

Churches and other houses of worship are a great place to raise awareness - their service programs often talk about charity work that they are involved in. We are asking all churches to include just a few paragraphs about CDH in their church bulletins on May 17, 2009. 1 church can raise awareness with 100's of people! If we all get our churches, friends and family's to join in with their churches, plus clubs and other organizations.... we can raise awareness around the world!!!!

"Churches for Cherubs" is just a rough draft name... we really don't have a name for this event. I just like the sound of that name. :) But it does include ALL churches, temples, synagogues, clubs, organizations, etc. Other CDH groups are welcome to participate and use a different name or "Churches for CDH" or "Day of Prayer for CDH" or whatever they'd like to join in! :)

Also, besides the educational part of this event... we would really like to ask those of you who pray to do so on this day. Pray for the babies and families affected by CDH, pray for the researchers and doctors and nurses. Pray for the end of Congenital Diaphragmatic Hernia. No matter your beliefs - please think positive thoughts to the end of CDH so that no more babies and families will suffer from this devastating birth defect.

You can ask more than 1 church to participate - invite every church in your town or all the churches in your district!

We don't want to exclude those who don't go to church. If you don't go to church, you can participate in other ways! You can hold an event such as a balloon release or candle lighting ceremony. You can have a fundraiser. You can just wear your CDH Awareness clothing or a ribbon button and tell people about CDH.

How do we do this? Just take the following paragraphs to your pastor / rabbi / priest / leader and ask them to print them in the church bulletin for Sunday, May 17, 2009. Feel free to use any of our graphics or your cherub's photo in the bulletin!!


Congenital Diaphragmatic Hernia

Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs to move into the chest cavity and preventing the lungs from having enough room to grow. CDH occurs in 1 in every 2500 babies. 1600 babies in the US every year. Over a half million babies around the world since 2000. Every 10 minutes a baby is born with CDH.

Babies born with CDH undergo surgeries and long hospitalizations. 50% of babies born with CDH do not survive. The cause is not known.

Please join us in learning about CDH and raising awareness so that more research may be done and more babies saved.

For more information about CDH, you can visit

CHERUBS Congenital Diaphragmatic Hernia Brochure

Please feel free to download and print our CHERUBS Congenital Diaphragmatic Hernia Brochure

In English

In Spanish
(thank you to Sebastian Villalobos Moltedo for translating)

In Dutch
(thank you to Nikki Haye for translating)

More translations coming soon!

Press Release: Charity for Babies Born Without Diaphragms & Lungs Welcomes New Celebrity Spokeswoman, Patsy Pease

Press Release:

Dawn Williamson *

Charity for Babies Born Without Diaphragms & Lungs Welcomes New Celebrity Spokeswoman, Patsy Pease

After struggling since 1995 to bring more awareness to Congenital Diaphragmatic Hernia, a birth defect that affects 1600 babies each year in the U.S., CHERUBS announces their first celebrity spokesperson, actress Patsy Pease.

Raleigh, NC - CHERUBS, a non-profit organization founded to not only help parents of children born with CDH, but to lead the medical community in finding the cause and prevention of this devastating birth defect, is working hard to raise Congenital Diaphragmatic Hernia Awareness.

Founded in 1995 by Dawn Torrence, CHERUBS is the world’s largest CDH organization with over 2600 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Immediately after Shane’s birth, Dawn searched for a support group, but there were none available. After spending hundreds of hours in the hospital's medical library researching CDH and finding support only from parents she met at the hospital, Dawn felt a great need for a CDH support group.

CHERUBS serves the CDH community without charging parents or medical care providers for it’s services. It receives no grant funding and has no paid employees. Fundraisers help to provide the services that CHERUBS offers, often on a shoe-string budget. Many charities are struggling during this economy and it is especially hard for smaller charities without marketing budgets to compete for media attention to awareness and for research funds. CHERUBS was thrilled when Ms. Pease agreed to become a spokesperson for a cause dear to her heart as well. “Whatever I can do to help will be my pleasure” Pease said.

Ms. Pease’s son was born with Eventration of the Diaphragm, a form of CDH and part of Arthrogryposis. Ms. Pease is well aware of the struggles CDH families face. “My son Russell was born with Arthrogryposis in 1990. He has had 11 surgeries before the age 0f 15. His first was to correct an eventrated diaphragm at 11 hours old. He was given a 10% chance for survival. Part of his multiple contracture and diaphragm problems resulted in Restrictive Lung Disease ( He breathes at 40 % capacity) Despite Russell's condition he earned a Black Belt in Tae Kwon Do at the age of 12. I was given invaluable advice by one of his surgeons long ago...."Don't treat him like anything is wrong with him and never do anything for him that he can do for himself". I watched with tears as he struggled to find his strengths and weaknesses and in turn discovered my own. I thank God for trusting and believing in me to care for my teacher, my son.”

Eventration of the Diaphragm is a form of CDH that occurs when the weakened muscle of the diaphragm allows organs from the abdominal cavity to move into the chest cavity; but unlike more common types of CDH, the diaphragm remains intact. Arthrogryposis is a rare congenital disorder that is characterized by multiple joint contractures and sometimes includes muscle weakness and fibrosis.

CDH affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Torrence’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems. CDH has affected over a half million babies around the world since 2000.

“I wanted to create an organization to help those parents of children with CDH,” said Torrence. “I know exactly how it feels to be going through everything that they have to deal with and have no one to turn to, and I want them to know that CHERUBS is there for them every step of the way.”

There are more children born each year with CDH than there are children born with Cystic Fibrosis, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH.

“There is still so much research that needs to be done,” said Torrence. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH so that more babies are lost to this birth defect.

In 2009 this birth defect should not still exist, much less still have so many unanswered questions and so little research. We will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found. We work toward saving babies in the future and honoring those we have already lost.

We plan to work on several projects this year including an educational video on Congenital Diaphragmatic Hernia that will be free to families and hospitals. We also just published a book of stories of these children and are in the midst of planning many events, including our CHERUBS Angel Ball in Durham in October and our 2009 International CDH Conference in San Antonio in July.

We are always so busy at CHERUBS and try so hard to bring more attention to this birth defect. Having Patsy on board is such a Godsend. I look forward to working with her to help raise more awareness so that we can bring more research to CDH and more information and support to these families”.



CHERUBS is an international charity located in North Carolina founded in 1995. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of January 2009, CHERUBS has over 2600 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.

About Patsy Pease

Patsy Pease is best known for playing the character of Kimberly Brady Donovan on “Days of Our Lives” from 1990 to 2008. She is one half of the soap’s supercouple of Kim and Shane (played by Charles Shaunnessy). She has also appeared in “Two Shades of Blue” (1999), “Total Reality” (1997), “The Young and the Restless” (1996), “Hardball” (1994), “Silk Stalkings” (1992), “Space Raisers” (1983), “Remington Steele” (1983), “Trapper John, M.D.” (1983), “Search for Tomorrow” (1979-1982). Ms. Pease has won several Soap Opera Digest Awards. She is a strong advocate for raising awareness of child abuse, giving lectures and speeches on her own personal experiences. She has semi-retired to raise her children and to continue her charity work.

*Special thanks to Rachel Wells at 919 Marketing for writing much of this press release.

Patsy and Russ

Thursday, January 29, 2009

Congenital Diaphragmatic Hernia Education Project - "Adopt A CDH Hospital"

We have a new educational project going on at CHERUBS! We are asking members to "Adopt A CDH Hospital". When a member "adopts" a hospital, he/she will deliver Parent Reference Guides and CHERUBS brochures. CDH parents can also donate a CDH Awareness Poster:

Or "Stories of Cherubs" books:

These can be donated to the hospital in honor or in memory of their cherubs. When new cherubs arrive, they visit with the new families and keep an eye on them; making sure they have all the information and support that they need. If you would like to adopt a hospital, please let us know! You can e-mail me at and make sure to give me your name, contact info and let us know which hospital(s) you would like to adopt!

Monday, January 26, 2009


CHERUBS web site is located at:

It has greatly evolved in the past 10 years. Our site first went on-line in 1997. It was bad. Horribly bad. It was just a few pages with little information and really not much help to parents - more of a page on how to contact us. It looked completely unprofessional but it was a web presence. We did it 100% ourselves and continue to do the web site ourselves.

Today, our site is over 40,000 pages. It is full of stories of over 400 children born with CDH, over 100 forums, over 1000 photographs and also includes a CDH Research Library, free downloadable information for parents, our newsletters, non-profit info, volunteer informations, events, fundraisers, free blogs, personal photo albums and much more.

It is no longer just a few pages for CHERUBS but it a web site for and about families dealing with CDH.

A lot of thought has gone into our site....

Domain Name Extensions - CHERUBS web sites end in .org -,, This means that we are an organization, a non-profit entity here to serve the public. Sites that end in .biz are business site and .com stands for "commercial" for commercial and business sites. They are usually for profit sites.

Originality - our site is original. It is not from a template that is used by 100 other sites. It was not bought pre-made and then edited to make our own. It is 100% original with original graphics and photos. You won't see photographs clearly taken from other causes or that violate copyright laws. You won't hear cheesy background music. You won't see a site that looks like it was created by a 13-yr-old with free software - we are professional and our site reflects that. No ribbons stolen from other sites and claimed as our own. No morbid black backgrounds or trendy colors that will go out of style in a year or two. No flashy site with tacky bells and whistles and no content. Our site matches our logos, printed materials, events and it goes with CDH. Cherubs are baby angels. Our site and organization isn't a hodge-podge of one person's likes or one child. Our site features babies born with Congenital Diaphragmatic Hernia.... not just 1 child or a few... but 100's of cherubs. Because CHERUBS isn't about 1 child, it's about ALL babies born with CDH and the families and medical staff and researchers that care for them and fight for them. Our name, logos, slogans are all 100% original. Our content is all 100% original. CHERUBS is the original CDH organization and our site reflects that. It takes a lot of work and creativity to build a custom web site for an organization or business; this is so much different than creating a personal site or an on-line brochure site. We have spent 1000's of hours working on our site over the years and continue to work on it several hours a week.

Purpose - There are so many web sites for charities that are nothing more than advertisements for them and asking for money - with no services or information for parents. Nothing more than a couple of paragraphs about the cause or disease or issue they are supposed to be raising awareness of. Several paragraphs about what they want (donations) or what they sell or bragging about 1 achievement - they are advertising themselves and asking help from the public instead of offering something to the public. I am so proud that we do not have a self-serving web site but a member serving and a public serving web site that actually helps families and makes a difference in their lives and educates people about CDH.

Accuracy - Our research and statistics are accurate. We do not manipulate numbers to try to make CDH more common than it is... such as comparing the occurrence of CDH (1 in 2500) to Down's Syndrome (1 in 900 at it's lowest occurrence rate). We are not about sensationalism but integrity. We are about giving parents the information and facts that they need to make educated decisions to help these children. We offer more than 1 page of abstract statistics copied from a medical textbook - we offer 100's of pages of information on CDH, in easy to understand layman's terms. We offer free downloadable Parent Reference Guides, lists of commonly used medical terms, links to CDH research and much more. Services CHERUBS has been offering on-line for almost 10 years.

Listservs vs. Forums - We linked our site to our Yahoo groups that we started back in 1998... which we found out sells member e-mails to spam companies. CHERUBS is so proud to keep our member contact information confidential and it is never sold or given to anyone else. But listservs are outdated, unsecure and for organizations who do not want to take a serious position on the internet. Listservs are often plagued with drama and the archives are hard to sift through and easily edited and manipulated by dishonest listserv owners. While we still have our old listservs for archival purposes only (our lists and site archives are never edited or censored), our site contains forums for families. Families can log in and look under specific topics. Unlike on listservs, parents who are grieving do not have to read e-mails about survivors and parents trying to conceive do not have read about pregnancies - unless they want to.

Experience - I am a professional web designer now - thanks to all that I learned volunteering for CHERUBS. Over the past decade I have learned a lot and have seen a lot and use this for CHERUBS. We know search engine optimization. We know how to make a professional site. We know the importance of branding. We know and obey trademark and copyright law and challenge it when necessary for the good of the whole CDH community. We add to and update our site constantly. We put function before flash. We know what works and doesn't work. Most importantly, we know how to best help and support the CDH on-line community.

Security - Our site is safe and software is secure. We do not sell or give out your information to other organizations, businesses or third parties. Ever. We put every new member through a security check to make sure that they are real and not spam robots or dishonest or banned ex-members who like to try to stir up drama. We will instantly remove any one who causes trouble, drama or who attacks others - though that hasn't happened since our old days on the listservs. Our members are safe to post without fear of judgment or attack. There is no drama on our forums. Ever.

Support - All CDH parents, survivors and medical staff are welcome at CHERUBS. We do not discriminate against anyone based on experiences, decisions, or background. It doesn't matter what your color, financial status, location or popularity is - there is no judgment and no "cliques" at CHERUBS. We welcome parents of survivors, non-survivors and expectant parents. We welcome survivors and grandparents. We welcome those parents who chose to terminate their CDH pregnancies just as we do those who chose to continue theirs. Politics has no place at CHERUBS.

Honesty - CHERUBS never posts anything that is not 100% true with proof and evidence to show so. Information that we post on our site and blogs is accurate. CHERUBS never involves ourselves in gossip, slander, false statements, outright lies, personal attacks or other salacious behavior. You will never see someone personally attacked on our sites or blogs. You will never see slanderous, untrue statements posted. Ever.

Global Support - CHERUBS is there for all CDH families around the world. No matter what country, state or hospital you are all - we are here for you. CHERUBS serves families in all 50 states and 38 countries.

Friday, January 23, 2009

CHERUBS 2008 Accomplishments

CHERUBS has worked very hard the past year and we have accomplished a lot in the last 12 months! We have raised a ton of awareness, are well on our way to getting the CDH research site going and we've supported a lot of families! Below are just a few of the things we accomplished in 2008:

- CHERUBS welcomed 640 new families affected by Congenital Diaphragmatic Hernia into our membership and on our forums. That's 640 more families who have the information and support they need on their journeys in dealing with CDH. Our total membership is now over 2650 and we are so honored and humbled to be able to help so many families.

- We held our 2008 International CHERUBS Member Conference in July in Raleigh, NC. We had a good turnout, a pizza party (in memory of Faith Grace Miles), the kids had fun with the magician and clown, and we had a day at the park where a wonderful photographer (Flashbacks by Red) took photos of our families. But mostly, our members gained a lot of support, comfort that they know they are not alone and friendships were made that will last a lifetime. A special thank you to Stephanie Olivarez, Kara Hess, Barbara Wagner, Penny Campsey, Lynne Brogdon and our entire conference committee!

- At our 2008 Conference we were honored with amazing speakers; Dr.
Meaghan Russell and Dr. Mauro Longoni (MassGeneral CDH Clinic, Boston, MA) discussed Genetic Research Into CDH. Dr. Priscilla Chiu (Sick Childrens, Toronto, Canada) discussed surgical repair of Congenital Diaphragmatic Hernia - flying in and out of Canada for 1 day just to speak for us! 2 x CDH Mom and Registered Nurse, Brenda Slavin discussed the Intensive Care Unit and Nursing Care. Our members learned a tremendous amount of information at our conference!

- CHERUBS became a member of ACDHO (the Alliance of Congenital Diaphragmatic Hernia Organizations), which works together to help support families, raise awareness and encourage research. We also work together on issues facing the CDH community, support each other with encouragement and advice, work together on research projects and keep each other informed of the latest medical advances and services available to CDH families. ACDHO is made up of CDH non-profits, sites, on-line groups and doctors. It truly is an honor to be a part of such an extraordinary ensemble!

- Our first annual CHERUBS Angel Ball was held on July 26th at beautiful Duke Gardens in Durham, North Carolina. It was gorgeous event put together by the amazing ladies at Signature Events and a wonderful gentleman at Tournament Promotions. The hall was just.... a fantasy. It was that beautiful. It could not have happened without Bridget and Michelle and the ladies from the Raleigh Jr. Womens Club, Victorian Seasons, Wendy and Jacquetta, our M.C. Keith Todd, the rocking band The Stoneage Romeos, the phenomenal catering companies and the wonderful photographers who captured the night on film. Our auction could not have been as wonderful without all the beautiful baskets donated by CDH families and the many items donated by celebrities (thanks to Elaine Moats for her hard work getting those!). We raised a lot of money and we had a wonderful time for a wonderful cause!

- We also held our first CHERUBS Golf Tournament on July 28th at Brier Creek Country Club in Raleigh, NC. This never would've been possible without Craig Williamson, Bridget Ketron, Dave and Jean, Pat from the Chapel Hill ARC, Wendy and Jacquetta, and the amazing Bob the Blade for his MC and video expertise and also to our wonderful sponsor Teleflex!

- We welcomed new Advisory Committee Members Stephanie Olivarez, Corin Nava and Kara Hess. These wonderful ladies bought in some "new blood", new ideas and gave us fresh perspectives on all of our services and goings-on. We are so proud to welcome them!

- Once again, our wonderful Ohio Representative, Tara Hall, held our annual Ohio Member Picnic!

- We published 2 Silver Lining Newsletters

- Stories of Cherubs Vol. II was published, featuring almost 100 more stories of CDH patients

- Cooking With Cherubs Vol. III was published and included recipes from around the world

- Gabriel's Gifts put together care packages for new and expectant families in New England

- We created over 100 Personalized CDH Awareness Ribbons for members

- We published photographs of over 500 cherubs in our 2009 CHERUBS Calendar

- We led the fight against the Congenital Diaphragmatic Hernia Awareness Trademark and will continue to do so until CDH Awareness belongs to everyone

- We sold 100's of CDH awareness items on Cafepress and added dozens more products

- We started a skateboard design fundraiser on Zazzle

- Our first CDH Awareness Bracelets were sold

- We added a new Facebook account and reached 100's of people, educating them and raising CDH awareness

- We used our Myspace account to raise more CDH awareness

- We launched our CDH Research Site and are working on getting the database up.

- We welcomed over 20 new volunteers!

- National Children's Memorial Day

- We visited several CDH families in the hospital.

- Ove 100 New Member Packets were made thanks to the friends and family of Gabriel Nava

- Our blanket committee was started

- We did a Television Interview for our local events and explained what CDH is, raising a lot of awareness and education!

- We were featured or quoted or referred to in over a dozen newspaper articles.

- We are working with the CDH Study Group on our database, with Dr. Lally guest speaking at our next conference.

- Over CDH forums had over 30,000 posts last year - that's a TON of CDH support!!!

- We provided over 50 CDH families with blogs to journal about their cherubs

- We created CDH Awareness templates for Myspace and Blogspot - reaching 1000's of people!

And that's not all we did in 2008!!!! Look what our members did:

- ATV Rally

- Jeremiah's Car Show

- New England Zoo Trip

- Pennsylvania Camping Trip

- Gabe's Bowl-A-Thon

- Gabe's Truffle Sale

So when someone asks what is CHERUBS doing for CDH families, I often reply "What aren't we doing for CDH families"? But then, that's what CHERUBS is here for.

CHERUBS on Cafepress

Today we received a check from Cafepress for our store earnings up to December 1, 2008. It was almost $500. You might think... that's not a lot for a store but that's for one pay period and with our mark up only about $1.00 per item. That means we only make about $1.00 for every item that sells. Books were a few dollars more. But mostly, that's a dollar for each item - shirts, buttons, bumper stickers, holiday cards, mugs, etc.


And that's not including holiday orders during December!

2008 CHERUBS Membership

In 2008 640 new families affected by Congenital Diaphragmatic Hernia joined our CHERUBS family.

640 new members.

We are so honored and humbled to be able to help so many families and to provide so much support, information, awareness and research. That is what CHERUBS is here for and what we are all about. Helping ALL CDH families as much as possible.

Big News.... BIG NEWS......

CHERUBS has a new celebrity spokesperson who is also a CDH mom.

We will reveal who is it next week! :)

Thursday, January 22, 2009

(Repost) CHERUBS - Congenital Diaphragmatic Hernia Organization

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.

Here at CHERUBS, we wear many, many hats.

Our first priority are CDH families and they deserve accurate information so that they can make the best decisions for their cherubs. We first published our Parent Reference Guide in 1996, giving parents a list of commonly used medical terminology and what it all means in layman's terms. Advice from other parents on pumping breast milk or planning a funeral. Songs to play for a baby in the NICU. Information from recent CDH studies. Diagrams of CDH. Correct CDH statistics. An article about CDH written specifically for CHERUBS by a well-respected pediatric surgeon, our Vice-President Lesli Taylor, MD. We make sure that they know infection and pneumonia cost more cherubs' lives than poor lung function. All of these things for them. Not to sensationalize CDH or gain attention for CHERUBS. But correct information for CDH families.

We give information and support to families. Offering support services since 1995. We created the world's first CDH web site, chat room, listserv, forums, blogs, newsletter and conference. Families are no longer alone dealing with CDH since 1995. We are proud of the fact that because our group has been so successful, several other CDH groups have spawned from our membership and follow in CHERUBS footsteps. There can never be too much support for CDH families!

Not only do we support CDH families, but we also support other CDH organizations. We have worked with En Stitching Hernia Diafragmatica, Holland's CDH group, for 10 years. Onno has attended one of our conferences and we enjoyed spending several days with him, hanging out and exploring Disney World after conference hours. CHERUBS Australia and CHERUBS UK now have non-profit status in their respective countries - with our blessing and the sharing of our knowledge. We work with the French and Italian CDH groups. We are strong supporters of Kays Kids, Rainbow of Hope, the Olivia Raine Foundation, Jack Ryan Gillham Foundation and Little Lambs. We worked with many of these organizations to collectively look out for CDH families best interests and fight the Congenital Diaphragmatic Hernia Awareness Trademark so that all CDH families can continue to raise awareness without fear. CHERUBS is very, very proud to be a member of the Alliance of Congenital Diaphragmatic Hernia Organizations which not only includes many CDH support groups but top CDH hospitals and researchers as well - all of us working together to help CDH families.

Our second priority has always been advocacy and awareness and this is reflected in our interviews in over 100 newspaper articles, interviews for television shows such as 20/20, interviews for magazines such as Family Circle and Women's Day. It is in the events that we have held for the past 15 years, teaching the public about CDH. Rallies and bake sales. Bowl-a-thons and ATV events. Formal balls and golf tournaments. Balloon releases and candle lighting ceremonies. In the 1000's of web sites that link to CHERUBS and CDH info. In the 1000's of awareness items we have been offering on our web site since 1997. We advocate for awareness every single day.

In 1997, CHERUBS compiled our first Congenital Diaphragmatic Hernia Research Survey, taking data from parent membership forms and compiling studies. We did this all painstakingly by hand every year until 2000 - when our membership numbers grew so big that we didn't have the time or the manpower to put together another survey by hand. Our studies were ordered by surgeons and researchers around the world and we have collaborated with several on their own studies. Our results have been submitted for publication to medical journals, co-signed by some of the world's top CDH surgeons.

We take our research very seriously and do not submit haphazard statistics or information to parents without checking with medical advisors first. We do our research the hard way - in the research library, talking to researchers, spending weeks going over every number before we release it to the members and public. We do not talk abstractly of CDH research, we do not write articles about the work of others found on the internet, we do not donate $100 to a hospital and call ourselves a research organization. We do actual research. We actually contribute to the CDH research community and have done so since 1997. It has not been easy and we have lost many a sleepless night tabulating data or pouring over medical journals - but our goal has always been to help lead the way to find the cause, prevention and better treatment of CDH.

Now, we are compiling the 2008 Congenital Diaphragmatic Hernia Research Survey Results with the data of over 2500 CDH families. The CDH Study Group now holds the world's largest database of research information on the diagnosis and immediate medical care of CDH babies. CHERUBS holds the world's largest database of research information on the family history, neonatal care and long-term outcome of CDH babies. We have always worked together and continue to do so with several projects in the works. Our CDH Research site is under construction and will be ready by Spring, 2009. It will compile CDH research data on the fly and will be available freely to all CDH researchers, families and organizations.

And all this is not easy. CHERUBS was started by 2 CDH parents with no experience but we gained non-profit status within 8 months. We started before there was an internet and without help. We paid our dues and did the hard work and we are so proud of all we have accomplished!

CHERUBS is a charity and is run as such. It puts our cause first - helping CDH parents. We do not look at our organization in the business sense. Charities give. Businesses sell. We do not feel a need for competition or making calculated business plans to make the most money or own the rights to anything. We are not selling anything. We are giving away CDH information freely, raising awareness and offering support. Our "business" plan is created by following our hearts and consciences, not our bank account. This makes it sometimes hard to provide all the services that we would like to give - but in the long run it is what has made us successful in helping 1000's CDH families and what makes our membership a family.

CHERUBS is still run solely by volunteers. Dawn, our President, volunteers over 40 hours every week to helping CDH families through CHERUBS - while also having a family and running a business and going back to college for medical courses. Our Advisors dedicate a minimum of 20 hours each every week as well, with several also donating over 40 hours of our time weekly. We have an extensive web site with 1000's of pages, forums, services and 24 / 7 support to families. We have blogs to maintain, Facebook, Myspace, and many other sites we keep updated with CHERUBS and CDH news. Newsletters and research to work on, awareness events year-round, fundraisers, books and more committees than most support groups. We have get-togethers and conferences. We maintain a huge e-commerce shop offering 1000's of CDH awareness items - all original and designed by hand by us. We also have our accounting, IRS paperwork, state paperwork and legal paperwork. All meticulously done and when we are short on funds and donations - often Dawn or one of the Advisors will personally pick up the tab to make sure that CHERUBS can continue to offer a needed service.

There is dedication and heart in CHERUBS. Everything we do, we do to help families and the CDH community as a whole. We do this with honesty, integrity and honor, making our cherubs proud. We are 1 big CDH family and we offer positive and comforting support to each other. Our focus is, and always has been, helping CDH babies and families.

We wear many, many hats at CHERUBS. And they all look fabulous! :)

(Repost) No One Knows

No One Knows....
by Dawn Williamson

No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.

No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.

No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.

No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.

No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.

No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.

No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.

No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.

No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.

No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.

No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.

No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.

No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.

No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.

No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.

No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.

No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.

No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.

No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.

No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.

No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.

No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.

No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.

No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.

No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.

No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.

No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.

No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.

No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.

No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.

No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.

No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.

No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.

No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.

No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.

No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.

No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.

No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.

No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.

No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.

No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.

No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.

No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.

No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.

No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.

No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.

No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.

No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.

No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.

No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.

No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.

No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.

No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.

No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.

No one knows what it's like to lose your child - unless they have been there themselves.

No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.

No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.

No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.

No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.

No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.

I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.

And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

Wednesday, January 21, 2009

5 Minutes to Drop the Congenital Diaphragmatic Hernia Awareness Trademark

Several people have forwarded us very slanderous and false e-mails written to them to intimidate and threaten them into not disagreeing with the CDH Awareness Trademark. One of the false statements that Elizabeth Doyle-Propst likes to state is that she is "unable to stop the court proceedings" to cancel the "Congenital Diaphragmatic Hernia Awareness" Trademark. It is now being stated that "CHERUBS started it" and "CHERUBS is keeping this trademark on record" because Elizabeth is "stuck". As humorous as this is, it's a blatant attempt to avoid taking any responsibility for filing for the trademark, not removing and wasting Breath of Hope, Inc donations to fight to keep it. Fighting to keep something that only 1 person wants.

Because Elizabeth does not have legal counsel and is not known for her researching expertise, we thought that maybe she might have overlooked the volumes of text on the TTAB site that say that all Breath of Hope, Inc has to do is write a letter asking to drop the trademark and submit to the USPTO office. That's it. She's definitely great at writing letters, especially ones filled with (inaccurate) legalese so this should take about 5 minutes to do.

5 minutes to listen to the families and researchers who have requested the end to the Congenital Diaphragmatic Hernia Awareness Trademark. 5 minutes to listen to 1000's of people. 5 minutes to listen to her own members.

If Elizabeth had not responded to the Petition to Cancel, then the trademark would've been removed and all this would've been resolved. She CHOSE to respond and fight for her trademark and continue this drama and continue to hurt the CDH community. She is CHOSING to continue this now instead of dropping it.

For Elizabeth's information, our lawyer sent us the following links that we would like to pass on to her:

602 Withdrawal by Opposition or Cancellation Defendant
602.01 Withdrawal by Applicant

37 CFR § 2.68 Express abandonment (withdrawal) of application. An application may be expressly abandoned by filing in the Patent and Trademark Office a written statement of abandonment or withdrawal of the application signed by the applicant, or the attorney or other person representing the applicant. Except as provided in §2.135, the fact that an application has been expressly abandoned shall not, in any proceeding in the Patent and Trademark Office, affect any rights that the applicant may have in the mark which is the subject of the abandoned application.

37 CFR § 2.135 Abandonment of application or mark. After the commencement of an opposition, concurrent use, or interference proceeding, if the applicant files a written abandonment of the application or of the mark without the written consent of every adverse party to the proceeding, judgment shall be entered against the applicant. The written consent of an adverse party may be signed by the adverse party or by the adverse party's attorney or other authorized representative.

37 CFR § 7.30 Effect of cancellation or expiration of international registration. When the International Bureau notifies the Office of the cancellation or expiration of an international registration, in whole or in part, the Office shall cancel, in whole or in part, the corresponding pending or registered extension of protection to the United States. The date of cancellation of an extension of protection or relevant part shall be the date of cancellation or expiration of the corresponding international registration or relevant part.

Chapter 600

An applicant may expressly abandon its application by filing in the Office a written statement of abandonment or withdrawal of the application, signed by the applicant or the applicant's attorney or other authorized representative.7

However, after the commencement of an opposition proceeding, if the applicant files a written abandonment of its subject application or mark without the written consent of every adverse party to the proceeding, judgment will be entered against the applicant.8 The written consent of an adverse party may be signed by the adverse party itself, or by the adverse party's attorney or other authorized representative.9

For information concerning the effect of a 37 CFR § 2.135 judgment against applicant, see cases cited in the note below.10
7 37

7 37 CFR § 2.68.

8 37 CFR § 2.135. See Fleming Companies Inc. v. Thriftway Inc., 21 USPQ2d 1451, 1456 (TTAB 1991), aff'd, 26 USPQ2d 1551 (S.D.Ohio 1992) (where excepted user abandoned application in concurrent use proceeding, judgment precluded applicant from obtaining any registration at all, although it may remain in proceeding as defaulting user); Goodway Corp. v. International Marketing Group Inc., 15 USPQ2d 1749, 1749 (TTAB 1990); Grinnell Corp. v. Grinnell Concrete Pavingstones Inc., 14 USPQ2d 2065, 2067 (TTAB 1990) (consent required for abandonment without prejudice regardless of motivation for abandonment, i.e.. a concession by applicant that it is not owner of mark and that judgment would be unfair to real owner, a nonparty to the case); and In re First National Bank of Boston, 199 USPQ 296, 301 (TTAB 1978) (where abandonment of application and notice of opposition were filed on same day, consent was not required because there was no application to oppose).

9 See 37 CFR § 2.135.

10 Miller Brewing Co. v. Coy International Corp., 230 USPQ 675, 678 (TTAB 1986) (judgment in first opposition, as result of abandonment of application without consent, operates as claim preclusion in subsequent opposition so as to bar applicant's subsequent application for an insignificantly modified mark); United States Olympic Committee v. Bata Shoe Co., 225 USPQ 340, 342 (TTAB 1984) (abandonment of application without consent in previous opposition does not operate as collateral estoppel or claim preclusion in subsequent cancellation proceeding between same parties since the two cases involve two distinct marks, and does not operate as issue preclusion because no issues were actually litigated in the prior opposition); Bass Anglers Sportsman Society of America, Inc. v. Bass Pro Lures, Inc., 200 USPQ 819, 822 (TTAB 1978) (judgment against applicant in prior opposition due to abandonment of application without consent operated as collateral estoppel in subsequent opposition involving same marks and same parties in opposite positions); and In re Communications Technology Corp., 182 USPQ 695, 696 (TTAB 1974) (judgment against applicant in prior opposition between applicant and owner of cited registration is not conclusive of likelihood of confusion and does not operate as a estoppel in subsequent application for a distinctly different mark).

Cf. Aromatique Inc. v. Lang, 25 USPQ2d 1359, 1361 (TTAB 1992) (applicant, by abandoning application with prejudice in prior opposition is estopped in subsequent opposition from attempting to register virtually identical mark for identical goods), and Johnson & Johnson v. Bio-Medical Sciences, Inc., 179 USPQ 765 (TTAB 1973) (dismissal of previous counterclaims with prejudice operated as estoppel barring same counterclaims in subsequent proceeding).

And for the information of the members of Breath of Hope, Inc., here is the USPTO's listing of how much money your "charity" is spending to "own" Congenital Diaphragmatic Hernia Awareness.

Putting one person's pride before the wellbeing of 1000's is not what a leader is supposed to do.

Monday, January 19, 2009

Videos of Cherubs - Faith Grace Miles

Videos of Cherubs - Liam Knott

Videos of Cherubs - Dakota Cawvey

Videos of Cherubs - Liviana Price


ACDHO (The Alliance of Congenital Diaphragmatic Hernia Organizations) was created as a forum for CDH organizations / groups / non-profits / sites to work together to help families affected by Congenital Diaphragmatic Hernia, to promote awareness and to increase research. The entire CDH community working together for positive goals in a positive environment.

Several members and other organizations are receiving threats and intimidating e-mails from Elizabeth Doyle-Propst so for the record:

ACDHO is not about Elizabeth or Breath or Hope. The CDH community has many other services and goals and does not revolve around one person or group or the dramas of groups who cannot get along with other organizations.

ACDHO does not have a leader. We are all equal.

ACDHO members should not be intimidated or attacked simply for trying to work with the CDH community.

If a member of ACDHO wishes to participate in standing against the Congenital Diaphragmatic Hernia Awareness trademark, then contacting them to intimidate them or harass them when there is a trial going on is a federal offense.

Breath of Hope, Inc and Elizabeth Doyle-Propst have been e-mailing and posting (rather immaturely) that "CHERUBS started it" when we filed the Petition to Cancel the trademark that was filed by Breath of Hope, Inc. Repeat - FILED BY BREATH OF HOPE, INC.

We are standing up for CDH Awareness and CDH families. Continuing to harass, threaten and intimidate CDH parents is unethical, cruel and illegal.

Contacting potential witnesses to intimidate them is a federal offense.

At any time, Breath of Hope, Inc can stop the trademark and stop this nonsense. Any statements that they cannot stop this trademark are false.

We highly recommend that Breath of Hope, Inc also find a lawyer.

Saturday, January 17, 2009

The Alliance of Congenital Diaphragmatic Hernia Organizations

CHERUBS is proud to be a member of ACDHO (The Alliance of Congenital Diaphragmatic Hernia Organizations). ACDHO was formed to build a stronger CDH community, with emphasis on working together in a professional and supportive manner, encouraging CDH Awareness and fighting against the ownership of it, increasing CDH Research and mostly to collectively offer CDH Families the most support possible.

The following organizations also honor such a high code of ethics and we are so happy that they are in existence helping in this fight against CDH:

CHERUBS Australia
Rainbow of Hope
Jack Ryan Gillham Foundation
Olivia Raine Foundation
Kays Kids / Real Hope For CDH
Johns Hopkins Unnamed CDH Group
Little Lambs
En Stitching Hernia Diafragmatica (The Netherlands)
Ernia Diaframmatica Congenita gruppo di supporto (Italy)
Association Hernie Daphragmatique (France)
CDH Study Group
Boston Childrens CDH Clinic

CHERUBS has been working with many of these organizations for years and some are very new. We have also been working with all CDH clinics and fetal care centers since the first one opened it's doors in San Francisco in the early 1990's. Of course there are more CDH clinics and hospitals who are involved and supportive as well! And we all have 1 thing in common - the desire to help families dealing with Congenital Diaphragmatic Hernia without any competition amongst each other, any ulterior motives and the drive to see "Congenital Diaphragmatic Hernia Awareness" given back to the families and researchers.

This is what Congenital Diaphragmatic Hernia Support is all about and we are so proud to be a part of it!

Wednesday, January 14, 2009

CDH Families Are Very Intelligent People

So we wonder what in the world Breath of Hope is thinking with all the flimsy excuses and smoke screens and double-talk when it comes to the "Congenital Diaphragmatic Hernia Awareness" Trademark.

A few important points.

- The March of Dimes has trademarked "Prematurity Awareness Day". "Prematurity Awareness DAY". Notice the DAY? :)

- The March of Dimes didn't and wouldn't trademark "Prematurity Awareness" because it would be unethical and millions of parents of premature babies would be in an uproar.

- "Congenital Diaphragmatic Hernia Awareness" is the ONLY trademark in the entire United States of America solely filed on awareness of a health issue. Other organizations have filed trademarks on specific events or fundraisers - March of Dimes' "Prematurity Awareness DAY" - but not for all awareness of a health issue.

- No one cares if Breath of Hope trademarks "Congenital Diaphragmatic Hernia Awareness Day". No one. Really. We've said this all along. Breath of Hope made the decision to trademark "Congenital Diaphragmatic Hernia Awareness" instead. Then did the other one as well.

- 100's of CDH families are against this trademark. Including members of Breath of Hope, Inc.

- Almost 100 pediatric surgeons and nurses have signed the petition against the "Congenital Diaphragmatic Hernia Awareness" trademark.

- When you file a trademark on something as important as "Congenital Diaphragmatic Hernia Awareness" and tick off 1000's of people and threaten CDH families and organizations, I wouldn't say that "CHERUBS started it".

- Breath of Hope, Inc and Elizabeth Doyle-Propst are now saying that all CDH organizations, families and researchers must ask their permission before we use the phrase "Congenital Diaphragmatic Hernia Awareness" on any goods and services that Breath of Hope offers. That means that any brochures, newsletter, fundraising items, shirts, events, etc - would have to get "permission" from Elizabeth Doyle-Propst and no doubt give Breath of Hope, Inc the proceeds. Even though CHERUBS was offering these services 8 years before Breath of Hope existed. Several CDH organizations have been around before BoH. This includes the CDH Researchers and CDH Clinics as well.

- This includes cafepress and zazzle products - to which they have already filed complaints. CHERUBS has been on cafepress for 7 years. 3 years before BoH even existed.

- If you start a new goods or service that Breath of Hope currently does not offer - there is no protection that they will not copy your idea and then claim trademark over it. They are known to imitate the work of others - the entire structure and even original name and all the original members of Breath of Hope, Inc came from CHERUBS.

- The trademark on "Congenital Diaphragmatic Hernia Awareness" is on the supplemental registry, not the main registry. Which makes it ILLEGAL for Breath of Hope, Inc. to threaten anyone who uses the phrase.

- Why did we file the Petition to Cancel? To get this trademark removed and stop this drama and the threats from Breath of Hope, Inc and make sure that it NEVER makes it on the regular registry.

- This trademark on "Congenital Diaphragmatic Hernia Awareness" is filed by 1 person, Elizabeth Doyle-Propst. Where is the rest of BoH's Board in all this? It is quite obvious that the Board of Directors at Breath of Hope, Inc. is in name only and either does not know what their "CEO" is doing or they do not care. Or they are the most gullible and naive people to ever walk the face of the earth after being given 100's of pieces of evidence, including court documents, a petition with over 5500 signatures including many of their members and ex-Board of Directors and a voice recording from a court proceeding.

- Elizabeth Doyle-Propst has no medical or legal training. She is not a doctor. She is not a researcher. She is not a lawyer. She has little personal experience with CDH (no disrespect to the memory of her daughter - just stating facts here). No experience with taking full care of a CDH child. Her CDH "research" is compliments of Google. She cannot get along with other CDH parents or groups and has a long, long history of conflicts. This is not a person who should be entrusted with owning "Congenital Diaphragmatic Hernia Awareness". Who decided she should file for this trademark and be in charge of CDH Awareness? She did.

- Elizabeth has said that we can all say "CDH Awareness" without fear.... isn't that nice? But how is it raising awareness if no one knows what CDH stands for?!

- The "Pinkwashing" excuse is ridiculous and the only ones who think it holds any water is the Breath of Hope, Inc Board of Directors. This excuse defies all common sense and the statistics are not even valid. Does BoH not realize that CDH parents know this?

CDH families are very intelligent people. You can read their comments with the signatures here -

So what is behind the "Congenital Diaphragmatic Hernia Awareness" trademark? One woman's need for control, revenge and greed. Those are the only reasons that seem remotely plausible.

There is not ounce of care and concern for CDH families behind the "Congenital Diaphragmatic Hernia Awareness" trademark.

CDH families are very intelligent people. It's extremely disrespectful to the entire CDH community to file the trademark. Then attack CDH families and organizations. Then ignore their wishes. Then ignore the wishes of the researchers. Then try to excuse this behavior with ridiculous dribble.

We know what's right for our children and the memories of those cherubs who didn't survive. We know what is ethical and what is self-absorbed.

CDH families are very intelligent people. We know what is right and wrong. This is wrong.

Once again, for the hundredth time.... the entire CDH community - including now 9 CDH organizations and over 5500 people - including over 100 doctors and nurses from ALL the country's CDH clinics and fetal centers - including 100's of CDH families - including Breath of Hope members - including former Breath of Hope Directors..... as we form 1 huge, global collective sigh.....

Enough is enough, Elizabeth.

Tuesday, January 13, 2009

Congenital Diaphragmatic Hernia Awareness Trademark

Elizabeth Doyle-Propst is representing herself and Breath of Hope, Inc and has filed to fight the Petition to Cancel the trademark on "Congenital Diaphragmatic Hernia Awareness".

So I'm sad to report that the CDH community now has a year of legal paperwork and proceedings to fight this trademark. Time and money better spent on helping CDH families. But CHERUBS and the other 8 organizations who signed the petition have an obligation to protect CDH families their right to raise awareness.

I'm not going to comment on Elizabeth's filing except that it's untrue... as will be proven by the documents and affadavits that we will submit but most of you can see how untrue it is just by reading it. It's pretty brazenly untrue.

I'm sorry everyone, we posted that we wouldn't fight the "Congenital Diaphragmatic Hernia Awareness Day" trademark if Elizabeth would leave parents alone with "Congenital Diaphragmatic Hernia Awareness" trademark. But she wants both.

Monday, January 12, 2009

Making A Difference

"The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing" - Albert Einstein

Let those of us affected by CDH never be classified as those who look on and do nothing, but rather who looked, saw and made a difference in making things better.

CHERUBS 2009 International Conference

The date and location have been set! July 23-25, 2009 in San Antonio, Texas! The hotel location will be posted soon.

Our conference include several CDH experts as guestspeakers, round table discussions for both families of survivors and grieving families, pizza party, entertainment for the kids and more!

This year we are expecting about 100 members with families flying in from as far as Australia! We will have at least 4 countries represented at this conference - hopefully many more.

All members of CHERUBS (including CHERUBS UK and CHERUBS Australia) are welcome to attend! If you're not a member, sign up for free at

Videos of Cherubs - Alyssa Catherine Kessner

Videos of Cherubs - Shelby Grace Olivarez

What YOU can do to make a real difference for these babies and CDH. Help ALL these babies and organizations in just 3 minutes for free!

Reminding everyone to sign who hasn't signed! Proceedings start tomorrow!

On a sidenote, a few legal blogs have written articles on this so that's some awareness! Not necessarily the positive CDH Awareness we would have wanted but awareness none the less. And every one of those articles (written by TM lawyers) agree that the trademark is insane, unethical and doesn't stand a chance. Even the comments to the articles agree. So do over 5000 CDH families, friends and medical professionals and now 9 CDH organizations. This is all a lot of wasted time and a lot of wasted donations by Breath of Hope, Inc (CHERUBS has not use any donations to fight this trademark). CDH families should come first - always - and this trademark never should have been filed.

It's a shame that Elizabeth Doyle-Propst and Breath of Hope, Inc are forcing the CDH community to go through all this but at the end, CDH Awareness will belong to ALL families, researchers and organizations again and no one will ever be able to trademark it. So this is all worth it to keep CDH Awareness safe and for awareness to continue to lead to more research.

What can you do today that will help ALL babies affected by CDH? That raises awareness all year round? That will allow millions to raise CDH Awareness without being restricted by 1 day or 1 organization or 1 person?

Sign the petition if you haven't already.

Forward it to family and friends and especially other CDH parents so they are aware and have the opportunity to sign too. Post on your blogs, other forums, listservs, sites, carepages, etc.

And say a prayer that this goes smoothly and without a lot of unnecessary drama.

Wednesday, January 7, 2009

Another CDH Awareness Trademark Filed by Breath of Hope, Inc.

If you truly want to help CDH families, take a stand against this behavior! Don't support it. Don't participate in it. If someone was beating up your child on the playground would you turn a blind eye to keep the peace? This is no different! If you saw prejudice or injustice or attacking in your church or school or neighborhood would you ignore it like nothing was happening? This is no difference! These are your rights, your child's rights on the line.

Do you want to ask Elizabeth Doyle-Propst permission to hold a balloon release in memory of your child? Or ask her permission to raise money for your local PICU with an awareness walk? And do you really think you won't pay dearly to get her "permission"? Do you think she won't deny anyone not a member of Breath of Hope or a friend of hers? Do you think she won't ask for any money raised to go to her? This is a woman who constantly and consistently contradicts herself and has been caught in lie after lie.

It costs $300 for each filing. This is $600 of BoH donations used to try to "own" Congenital Diaphragmatic Hernia Awareness. It cost CHERUBS $300 to file the Petition to Cancel - but that was sponsored, it did not come from donations. We would never misappropriate funds.

To fight a Petition to Cancel it will cost Breath of Hope, Inc. anywhere from $50,000 to $100,000. Yes, you read that correctly - that is what any good attorney will charge. BoH's insurance will not cover this once they find out that this was rooted in issues going back 4 years and it is prexisting from before their policy. This means that the costs will come from donations made in honor and memory of babies born with Congenital Diaphragmatic Hernia.... money and time better spent on research.

This also means that CHERUBS lawyer can bring up Elizabeth's perjury - a federal offense. And we will not hold anything back to show her any kindness she has failed to show CDH families with this trademark.

No pro bono lawyer will take a losing case barely on the supplemental registry. "Volunteer law students" will take any case for experience whether they can win or not. Law professor often take cases for students that they know will be short and know that will be lost to teach the students. But even this cost money for USPTO fees. Donations used for unethical reasons.

Instead of listening to the 100's of families asking them to stop this trademark - they filed another one. That's twice the time and money going for 1 person to control CDH Awareness.

If Breath of Hope, Inc is so sure about winning this trademark and so honest in their intentions - why register a second trademark - especially one that is a longer version of the one they claim they have a right to own? Because they know the first one was wrong. Why not graciously stop this and respect CDH families? Ask them why. They visit the petition site, they read what parents and doctors write. They know that the entire CDH community is against these trademarks. They do not seem to care.

"Pride is concerned with who is right. Humility is concerned with what is right."
— Ezra Taft Benson

But we will gladly step aside and give them the new trademark of "Congenital Diaphragmatic Hernia Awareness Day". We will even stop posting about it. If BoH will finally do the right thing! And hopefully stop the other bad behavior too (harrassing and stalking parents, attacking parents, filing false charges, etc).

All we have ever asked is that Breath of Hope, Incorporated and Elizabeth Doyle-Propst and the rest of BoH Board of Directors do the right thing and leave CDH Awareness alone! It's a sad, sad shame it's taking court proceedings, petitions, 8 CDH organizations, 1000's of people to try to convince them of the difference between right and wrong. Especially for an organization that claims to be a CDH support group. CDH families should come first. Always.

We should all have better things to do than deal with this! It is taking time and money away from services and research for CDH!

Sign the petition at

Videos of Cherubs - Asher Switzer-McCoy

Tuesday, January 6, 2009

What Those Affected by CDH Are Saying About the Congenital Diaphragmatic Hernia Awareness Trademark .....

Below are some quotes from what people are saying about the trademark on Congenital Diaphragmatic Hernia Awareness on the petition at

An organization that truly cares about it's cause would listen to the people it is supposed to serve and not be self-serving.

As the mother of a surviving CDH child I am appalled by this request for ownership. Had more awareness been available when my son was born, he may have been identified and treated for this condition prior to his birth. The trauma and resulting effects of the day of my son's birth remain with us today, and will for the rest of his life. - Margaret Thompson

It would be unthinkable that the Patent Office would approve this Breath of Hope's request. It should not matter WHO uses the phrase, as long as awareness is raised for our precious CDH babies. Please do not limit the awareness of CDH to one corporation. - Dawn Grady

Give me a break! I and many other hard working physicians and surgeons around the world have been promioting CDH awareness for more than two decades. Promoting awareness is one thing and is admirable. Trademarking the phrase and concept as though it was an original idea is quite another and in the long run risks having exactly the oposite effect by hampering the efforts of others, some of whom have been doing this a hell of a lot longer than this group, to get the same message across. - Jay M Wilson MD

Raising awareness of CDH belongs to all family and friends of those whom have been born with this horrible defect. It cannot and should not be owned by a single entity, organization or person. Awareness began with each one us the day we found out about the person in our life that had/has CDH. That right and those words should not be allowed to be taken away or denied from another person. - Carole Olson

Mother of a surviving child who had a CDH. This is ridiculous. How can you claim patent to something that is used regularly by others. I have never heard of this group nor what their intentions are for the use of this patented phrase. - Sandra Richards-Vance

I sincerely hope this is blocked for all families and babies who are affected with this defect and also for all others families who have children born with any kind of defect. This could set a precedent. - Becky Howard

As a parent who has lost a baby to this severe birth defect, the fact that an organization that supposedly supports me is seeking to copyright the awareness term is abhorrent. What is motivating this move? I feel betrayed by a group that is supposed to be helping people like me. Is there a profit here or a stab at other organizations? - Judye Nazareth

why would anyone want to put a trademark on a phrase like CDHA, it disgusts me that considering this defect has had such an impact on so many, and so many beautiful lives have been lost, that anyone would want to own the awareness, that has helped us all. - Michele Keating

What purpose would it serve to have one organization hold a patent on this phrase when it would hurt so many other organization and individuals who are trying to make a difference, not a profit. - Karen Blandford-Anderson

How does such an idea get started to - own an awareness??? I'm having a hard time understanding what benefit could come from it? I can only see the limitation of other organizations trying to raise awareness. - Tami Traficante

Shame on such a soulless entitiy. - Jeanne Mapes

I am horrified that one small group feel like they are the only ones able to spread awareness for CDH. We all need to work together to get awareness out there - not try and monopolise this. It is a disgrace that they have even applied. - Danielle Kessner

I am absolutely offended and appalled that someone would willingly try to own and dictate the use of the term congenital diaphragmatic hernia! What right does anyone have to do this? There is no control over this devastating birth defect. There is no way of knowing whom it will affect, how it will affect them and when it will happen. As a mother of a child affected by congential diaphragmatic hernia I can not believe that someone would do this. All the babies out there born with Congenital Diaphragmatic Hernia own this term they fought against it and were burdened with being born with it. Do not take this away from them! - Jaana Rosenlund

I am 21 years old, I was born with CDH it has affected me more than words can say after 8 surgeries and having another tomorrow there is noone in this world that should take the awarness of CDH away!!!!!!!! I live with it everyday awareness is key - Danielle Ranta

Awareness is essential, as a parent who has lost a child to CDH I would not want to see all the work that many not for profit organizations do be stopped or hampered by a trade mark infringement. - Stephen & Stacie Blay

Nobody has teh right to "own" the name of a disease. It effects thousands across the world annually - not just 1 organisation. How horribly selfish and disturbing that they would even think of doing this. - Caitlin Robilliard

My daughter died of CDH on June 24th, 2008. She lived 11 minutes and 6 seconds. I need others to know the severity of this birth defect. I need others to be aware and to support the research of this horrible defect. I need others to be aware so that our babies live on even after their life is complete. - Amber Grover

How can they patent this phrase? If anyone should have a patent on it, it is CHERUBS but how can one organization have all the responsibility of awareness for anything? - Kimberly Leibe

I lost my daughter to C.D.H. and I was a member of that organization that wants to own C.D.H. awareness. I can't believe people who say they want to help families would do such a thing. What is most disturbing is that so many people are signing this anonymously. This has gone too far again. Thank you Dawn, for having enough strength to stand up for all of us. I can't imagine what you must deal with on a daily basis to help all of us and the personal cost you have paid by dealing with such horrific behavior. Please let me know if I can do anything at all to help stop this. - Michelle

The money spent by this group for an attorny could have been used for CDH research. Whom is this group supporting; CDH or themselves? - Marsha Wartell

To trademark the term Congenital Diaphragmatic Hernia Awareness will strip all hospitals, research centers/organizations and other CDH organizations the right to do exactly what the term says . . . make the public aware of CDH! - Kate Crawford

I have a daughter that died from CDH in 2007, the idea of a group having exclusive rights to "CDH awareness" is ridiculous, the goal should be preventing others from suffering and all organizations should collectively work towards this goal. - Stephen Crawford

I am very happy to sign this petition that is taking a stand for CDH families and babies around the world. - Ellen Wilson

i think it's just so they can make money they don't care who it efects they need to be stopped - Brandon Elko

i too lost a child to CDH , haven't we lost enough , we deserve the right to have this phrase to use where and when we choose, it's ludacrious to me that this can even come up as an issue! - LaDawnielle Wallace

I am a mother of a CDH baby who passed away due to this defect only 3 weeks after birth. I think is wreckless and selfish for an organization to claim all rights to CDH awareness. Families affected by this horrible defect should have access to any and all possible information about CDH so that they can not only prepare themselves for the battle but find solace and peace in other families who have walked in their shoes. This entire debacle simply proves that people are losing sight of what truly matters. We shouldn't be fighting over words but working together to combat CDH in honor and in memory of the thousands of babies born with this defect, and raising awareness so that hopefully, other families will not have to know the pain that comes in losing a child to this defect. - Tricia Smith

I strongly agree this is the most ridiculous and mistaken use of a trademark phrase. The more awareness the better and for 1 organization to attempt to be the only one promoting CDH awareness - that IS detrimental and prohibitive!!! - Cindy Gariepy

If this trademark is approved, it would set a precedent for all awareness groups. No one person or entity should "own" a health awareness. - Lisa Hamrick

I think if this organizatio is trying to help this cause then they should/would relize how much their action would hurt it. - Dominique Beer

Please do not trademark a birth defect. We must do everything possible to raise awareness to save as many precious babies as possible....we would not have my precious niece if doctors, families, and those wishing to donate did not learn of the important issues in order to help and save. - Pamela Huntress

This is disgusting. You have our support to stop this. - James Miller

No one should have the right to the name of a disease or birth defect? The person applying has some money making scheme up their sleeve it would appear - Dan Grace

No one should own a disease awareness. It is a medical condition that gets used may many helpful non for profit programs and websites. They provide useful services to people like myself who have a 1 month old with CDH. If this was taken away from us we would be lost without these free services to help. - Timothy Rogers

NO ONE should be able to own any phrase related to a medical condition!!!!! - Jen Jimison

This is ridiculous! How can anyone claim a copyright on something that is a phrase to describe something so specific? This is a cause that cannot possibly use any other name or despcription because it IS the disease! Breath of Hope is obviously not taking the children who are suffering & dying from this disease into consideration at all... which would make me question their validity. - Diana Pierce

As a parent of a Congenital Diaphragmatic Hernia survivor, the thought of someone owning this phrase nauseates me. It would be like someone owning "Breast Cancer Awareness". Every rally, every race, every fundraiser would have to be cleared with the owner. What could be accomplished then? How could true awareness happen then? Please deny this petition and any like it in the future. - Brenna Wright

I think its just sick. - Jason Kerley

We lost my son to CDH and awareness needs to be raised. Do not take away the right of any person to spread the awareness. We have a God given right to spread awareness because we've earned the right from losing our children. It needs to remain available for anyone to use. - Debra and Jerald Haney

Allowing any organization the right to own awareness of any birth defect or disease hurts many innocent families and health care professionals to any and all options available to care for their affected family member. - Beth Berge

I can't believe one organization can be allowed to be the sole benefit to use "CDH awareness". While other support groups around the world is to offer support to CDH babies and uses these phrases to help inform and educate people around the world. - Jennifer Doan

as a NICU nurse, I've seen firsthand that families with a child having this diagnosis need all the information and support they can get.Babies born with this diagnosis are truly the sickest children in the country with a 50% survival rate. No one can own awareness, that is the right of the unfortunate few who have to live through it. How will parents find support and information with the title copyrighted. This is a medical diagnosis and in following the words of the hypocratic oath, first do no wrong. This is wrong. - Lorraine Jennings

Its disgusting that the only reason that anyone would want to patent awareness verbiage would be for the sole purpose of profiting from it -- that would be the only reason to do it and none other. Forcing people to use their organization to get the word out; and educate people is utterly disgusting - makes me want to vomit. They deserve to rot in hell for that thought and the audacity to actually follow through on it. - Christie Skerski

This is try and stop an organization that has been raising awareness of this birth defect for this long is just wrong. Are they hoping to make money off this defect?...and if so, how horrid for those that have lost babies to this. Many, many years ago...1975 to be exact....I lost my newborn son to what they called a Hiatal Hernia which caused many problems and within 20 hours our son was gone. If awareness of this defect can help to stop someone from the heartbreak of having to say goodbye before you even get a chance to say hello and feel the warmth and bursts of love that you feel when holding your newborn up close to you, then by God, stop this nonsense now. No-one should be allowed to *own* awareness. The more people that are allowed to bring awareness the better we all are. - Misty Willetts

I think this is very wrong that someone thinks they have the right to own this birth defect. I personally do not know what I would have done without CHERUBS and everything that it stands for. - Ashley Jackson

No person or group of people should control the rights to something. we should each have the right to speak out for or against anything, according to our beliefs. We should each have the right to raise awareness without worrying about legal issues over a name or a phrase. lets all work together. - Karen Pestana

Elizabeth has fallen off of her rocker if she thinks this is helping CDH families. This is helping Elizabeth. This is a personal vendetta not a charity trying to help CDH families. Most of us know what Elizabeth did to Dawn and Cherubs; I can't believe she has the nerve to continue this behavior. Where is Breath of Hopes board in this? Do they not have the common sense God gave them or they all that gullible to believe this isn't something horrible that is happening here. It is all just disgusting. Cherubs and Australia Cherubs have my complete support in stopping this trademark. CDH awareness belongs to everyone and no one should profit from it or use it to gain control of others. - Mary

to be trademarked. "Congentital Diaphragmatic Hernia" is the name of a disease. No different than Cancer, and Leukemia. - Tammy Poteet

this is an outrage and very upsetting . please do not let this happen . as a mother of a cdh baby i am deeply upset over this. - elizabeth dunne

No one should own words and no one should profit from the awareness of any birth defect that devastates so many. When we lose the word awareness then we live in darkness. Please do not grant this patent to one organization. - Jean Lewis

As a member of CHERUBS and the mother of a child that was born with CDH, I do not agree with ANY organization having this ownership! - Vanessa Hutchinson

This is rediculous. It is unfair to the parents that have CDH babies and the children that have it! I cannot even begin to comprehend how this even became an option for someone to own the name CDH when there are families, hospitals, and children trying to fight and help CDH! - Megan Cole

If you have gone through the living hell of being with your child in the hospital and thankfully at home, you would understand how wrong this is. Why does someone need to trade make awareness of anything? - Christina Stipicevic

Please do not allow any organization to copyright the phraseCognital Diaphrmatic Hernia Awareness. This would limit many families affected by this birth defect to raise money for researching the causes and reducing the number of babies affected by this terrible birth defect. - Susan Wright

The notion of "word" ownership is farcical. "Congenital Diaphragmatic Hernia" is a birth defect and specific medical condition, and I do not believe the patent office would consider offering exclusivity on this birth defect. Why, then, would the addition of the word "awareness" constitute a patent-worthy phrase? In order to obtain a patent, trademark, or exclusive use of this phrase, the applicant should demonstrate that their METHOD of making people aware is novel, or unique in a dramatic and unmistakable way. The process, then, could be patented and I would agree with that. I strongly disagree with the notion of trademarking any word or phrase that is otherwise universally used to describe a condition when it is clear that the sole purpose of doing so is to deny the use of that phrase to other medical institutions. This trademark application is suspect on the grounds that its only function is in preparation for litigation against other health care organizations. It would be irresponsible to allow this trademark to stand, as it will inevitably divert funds away from helping infants with this condition. Shame on the applicant for such a scheme. - Andrew Epstein

As a parent of a child with CDH, I think this would be a huge set back for all CDH kids and future CDH kids. They go through enough pain and suffering already, please don't make it worse. - Melissa Glennie

"CDH awareness" is a common expression and should not be allowed to be trademarked. Individuals and organizations promoting awareness of CHD ought to be able to use this wording without permission because of ownership by some organization. Sincerely - Paul D. Blandford

"Congenital Diaphragmatic Hernia Awareness" is a generic phrase used by many groups working to educate the public about this birth defect. Giving one organization a trademark for exclusive use is detrimental to that overall effort. - Cindy Middendorf

I am writing to oppose the attempt to "own" or to establish as a trade mark "Congenital Diaphragmatic Hernia Awareness by the Breath of Hope organization. Cherubs was extremely helpful to our family when our granddaughter was diagnosed in utero with a congenital diaphragmatic hernia. Kylee eventually died from this problem and we were all so very grateful to Cherubs for the support and education they provided to our grieving family. Sincerely, Margaret Green - Margaret Green

Trademarking a phrase commonly used to help people and families of a birth defect is just plain wrong. - Marni Nabors

No one person should be able to own an awarness a disease or a birth defect. Several families have been affected by this birth defect including mine. Alot of mothers who have been affected by this have made it their goal to spread the word about CDH and its not fair to take that away from them. - Clerissa Thomas

Elizabeth, you should be ashamed of yourself. How is this bringing honor to your daughter's memory or helping any CDH families? - Patricia Jones

This petition is absurd!!! I am angry and offended. As a grandparent of my dear grand daughter who recently died of CDH. I can't believe anyone would be so SELFISH and SELF-ABSORBED as to even think of making this a trademark. I recommend some serious counseling to whoever came up with making CDH awareness a trademark issue! Disgusting..........It must be for a profit and seeing as there is and will never be a cure, it must be for personal gain. - Lori S Campbell

I can not see how one person or organization can try to trademark a birth defect with the word "awareness" behind it. This is the most ludicrous trademark filing that I've ever heard of. Not only does it take away from other organizations and the medical community from using the phrase "CDH Awareness", this would also affect unknowing physicians and nurses from using this phrase either in speaking to their patients, other colleagues and using the phrase UNKNOWINGLY when they are attending medical conventions and presenting lectures at conferences about CDH. MOST importantly, it would infringe, unknowingling in almost ALL cases, from a parent of a CDH child from trying to get the message out about CDH to others. There is NO other phrase or words than "CDH Awareness" that these people can use. I do not see how one person or organization can even imagine that they can take ownership of this phrase. They would be causing detrimental and irreparable harm to many organizations, the medical community, and most importantly to the CDH families. There would be literally thousands upon thousands of individuals that are unaware that their usage of the phrase "CDH Awareness" would and could lead to Federal offenses. There is NO other word to use than "AWARENESS" to bring AWARENESS to CDH (or truthfully, any other entity) than the word AWARENESS. By granting Breath of Hope the exclusive legal usage of the phrase "CDH Awareness," it will bring a very spiteful organization (I have personally known the Founder and President for several years) and have seen her and her organization do some very under minded, spiteful and vengeful things to people and organizations that don't agree with her or her organization. They are just trying to stop almost EVERYONE from using the phrase "CDH Awareness" so she/they can claim legal ownership of it and thereby if they find anyone using it, they can go after them legally. It is all a power and control issue with Breath of Hope and the Founder/President. She/They want to control what every CDH Support Group does and MOST importantly DOESN'T do or isn't able to ACCOMPLISH and has tried every method in the last few years to bring ALL of the other CDH Support Groups that don't agree with her crashing down. By granting Breath of Hope the exclusive legal use of the phrase/term "CDH Awareness," it would give Breath of Hope and mainly the Founder the ULTIMATE power and control over ANY ONE mentioned previously. It would be extremely detrimental to EVERYONE in the CDH community to grant her/them this power to legally be able to sue who ever uses the phrase "CDH Awareness" and to do this SELECTIVLY! I beg of you, as the parent of a child who died of CDH, to PLEASE DO NOT approve Breath of Hope's exclusive legal rights to the phrase/term "Congenital Diaphragmatic Hernia Awareness" based on the reasons stated. Many thanks in advance for your consideration of my request. - Judi Toth

This sort of thing goes directly against the intent, doesn't it? Yes, it does! - Ron Simpson

I had a child with CDH. I think it an abomination for an organization to trademark a term. This term is needed by all to hlep families, and anyone. - Karen Bauer

Please do not allow this company to own the trademark for Congenital Diaphragmatic Hernia Awareness. Those of us who have lost babies to this disease should be able to use this phrase to help others in need. - Amy Dechary

i think this is discusting, my son died of cdh why would some one wanna own congenical diaphragmatic hernia awareness and make off it. its a discrace 2 my sons name it shouldnt happen - joanne

CDH Awareness is not somithing you buy it is somthing you do. Families effected by CDH should be able to get and spread awareness through an organization of their choice. If one person buys " Awareness then what happens to the rest of the organizations trying to freely spread " Awareness" ? - Christy Michel

As a parent of a child who was born with CDH who did not survive, this whole issue is quite disturbing to me. In no way should a single organization own any kind of trademark like this, which obviously would prevent other organizations from using it. It's just ridiculous. Let's start thinking of our children here. Well, most of us are, but some people want to continue causing problems for the whole CDH community for their own personal gain. All this drama isn't funny anymore. I'm so tired of it. It is more heartbreaking than I can put into words. Like I said before, most of us are thinking of our children here, and we want to stand united against the fight for CDH, not have our rights taken away by a person who has nothing better to do than to disrupt the lives of others. This is only my opinion. Thanks. - Alyssa Hagen

i am glad no one has tried to trademark the name breast cancer in order to profit from marketing efforts. imagine all the millions of women and men who might lose out on research efforts made possible from the awareness efforts. Susan G. Komen would be turning over in her grave right now. Please don't let them do this to the C.D.H.A. effort. - roy d fisher

something like this should not be trademarked as it is for the good of all people with cdh. - Alfred Gariepy

It's sad that there has to be a petition to try and stop something like this. If only common sense & doing what was 'right' played more of a role in our society, our government. To the parents/family on here that have suffered a loss...I'm truly sorry. ~God bless you. - Melissa Blake

It is absurd that a common everyday expression can be trademarked for what would presumably be corporate profit: private individuals should not be prevented from conducting their own campaigns to raise awareness of this dreadful condition - especially when funds are so desperately needed. Our son was borne with CDH three years ago and survived against all odds: as someone who has raised funds for research I find it unfair and unreasonable that someone is trying to trademark this expression. Please deny this application. Regards, Haydn. - Haydn & Ek-Orn Thomas

To patent such a phrase is an disgusting example of corporate greed at its worst! - Gloria Parkinson

Are you kidding me??This has got to be a mistake!No one should OWN something that's not theirs!Do the right thing here...please! - susan clark

No one should be able to legally profit from the pain of thousands of infants. - Jennifer DeReus

I am the grandmother of a CDH baby. My grand-daughter died because of this terrible birth defect. I watched and felt the suffering as I held her tiny hand.The pain my son and daughter-in-law went through was horrindous. Anyone should be able to use this term without permission, especially those who have experienced the pain associated with this. - shirley g. Richards

I aree with the above petition in not restricting the use of a term that is the goal of all of the organizations that help parents who have had children or ever have children with this devastating birth defect. - Vivien Diaz-Barrios

No organization or individual should be able to trademark or own "Congenital Diaphragmatic Hernia Awareness". If another organization trademarks this phrase, this would severely restrict a very worthwhile organization, CHERUBS, which is the FIRST organization dedicated to CDH Awareness. As a parent of a child with CDH and a health care provider, I have found CHERUBS to be a tremendous source of information regarding this birth defect, as well as a wonderful support group for people affected by CDH. Please do not allow a group to "own" the exclusive right to use the term "Congenital Diaphragmatic Hernia Awareness" - Chris Barry

I strongly disagree with any one being able to own the words Congenital Diaphragmatic Hernia Awareness. Thank You - Lynette Moloney

Let's not sell off scientific terms for marketing purposes, even if the marketing is to raise awareness. If they want to copyright something make something up that's unique. - Steve O'Rourke

I agree that this trademark application is ridiculous and must be promptly rejected. - Martin Bromser-Kloeden

My son has CDH. I am a member of Breath of Hope, the organization applying for the trademark, as well as other organizations regarding CDH. For any one organization to trademark "Congenital Diaphragmatic Hernia Awareness" would be a bad thing for all the organizations, and though I don't think Breath of Hope would do terrible things with it, allowing it would set a dangerous precedent for other diseases, as well. - Alan Karna

I have a grandson who was born with CDH and our family had NO awareness of this horrible condition. All persons should be able to use the term CHD AWARENESS to educate others and help the families dealing with the devastating problems associated with CDH. - Nancy Lowry

Notice the filing date, April Fools Day. This is the sickest joke I've ever seen. Should this be a real organization applying for a real trademark or patent of the named disease and it is granted then our government officials are the biggest FOOLS April or otherwise of whom I've ever heard. - Joan McKenna

It is a sad day when any organization is making an attempt to profit from a birth defect. By allowing any organization to 'own' a birth defect would require permission (and usually a fee) from that organization to use the name or abbreviation in awareness of individual fundrasing efforts. How greedy can we get? - Angelynn Mescher

No one should own a trademark on the name of a birth defect. Its an injustice and needs to stop. - mark lucas

This has got to be a joke. Families affected by CDH ALL own the Awareness. - stephanie olivarez

No one with good intentions would want to trademark awareness of a birth defect. - Jack Miller

the American idea of intellectual property has gone a bit haywire in recent years. applying for exclusive use of the name of a disease, however, is a shockingly low tactic. I appeal to your sense of reason when I ask you to protect the public good by denying the use of CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS as a word mark. - David Holman

I have been a member of cherubs for years, don't take this away from us! - Michele Childress

i was hoping that this was a joke, however i see it is not so here is my 2 cents... i won't agree to this, but i would love for someone to volunteer to take ownership for the words "grief", "death", heartache" ...oh yeah that's right that is the part of CDH no one wants to revel for. owning something won't stop cdh, if it would have i owuld have bought it two years and 9 months ago today...happy birthday my sweet aubrey...born 8/14/06passed 8/28/06left behind her twin sister anneleise and parents who loved and wanted her more than anything... - whitney

Health - particularly the health of children should be something all people and organisations put some effort into fixing - it's not the domain of one small yoga association pushing their particular brand of therapy. Shame on them. By all means, do what you can, but do it without claiming a legal protection / monopoly in the process. Breath of Hope? You have got to be kidding me! - Laurene Trim

what right do these people have? If any person should own it should be the medical profession and all the people who have been affected by this defect. At least the living are normal not like these person(s) trying to do this!!! - kylie beswick

Greed should not be placed before the health of babies - Ken McKay

This definitely shouldn't be allowed to happen. I have a CDH daughter. When she was born I had no awareness of the condition at all. It was only when I found CHERUBS that I started to understand it and how lucky I was to still have her. - Sharon Cribben

Unbelievable! What great purpose would a company have (besides monetary) to own the name of a birth defect. The mothers, families, and supporters of these babies would not be allowed to utter the word or put out any literature or fundraisers without "special permission". That is outrageous and I hope that it is not allowed. The company that is applying should know better than that. - Jennifer Fitzgibbons

It is wrong to benefit financially and gain attention from families who are suffuring through a loss of a child who passed on from a birth defect or children who are living a life with such defect. How horrible it is for a group to come together and want to claim what has already been taken by families using it as a non profit awareness tool to the public. - Stephanie

As the mother of a child who was born with Pentalogy of Cantrell, which included CDH, I find it appalling that anyone could essentially own awareness of this condition. This is something I am fully against, and I am happy to sign the petition to prevent this from happening. - Sarah Doyle

This term shouldn't be "owned". It doesn't make any sense to do so. The person behind this is trying to deal with her own grief of losing a child. Lashing out at other organizations who are also trying to make people aware doesn't help. - Stacy Ernst

Since there does not appear to be an accepted agreement on exactly how to best treat babies affected by CDH, there should not be a sole body advocating how its awareness is raised. - Alex Houchin

Once again people looking out for themselves without any consideration for the children and families who have to live with and deal with CDH everyday. - Ellana Dawson

The babies affected are the owners of this "term" or "word mark". Please, let us all raise public awareness through good will and support for those affected and their families. For all my 40+ years I had never ever heard of such a birth defect until my precious granddaughter, Natalie, was born with it in 2003. We lost her after 12-weeks of life and she taught me more in those 12 shorts weeks than I could have hoped to learn in a life time. The education that we received through various services provided us with the understanding that we needed to cope. - jane burlingame

Why would any organization want to own the acronym of a birth defect as a trademark? Does anyone own ADHD or SIDS or AIDS? Or are those next to be patented as official trademarks? If the patent office allows this, it will be a sure sign that all our children - even the ones who are not aborted and do not suffer with birth defects - are considered as non entities with no entitlement to any rights whatsoever. And THAT will be a sure sign that our nation will not long endure! The future of our nation is in how it treats its children! - Denelda Giovinazzo

get real make a living off something else......leave this alone!!!!!!!!!!!!!!!! - Jeremy Lovejoy

This is absurd! I have never heard of limiting the awareness of any disease or cause to one organization. How can one entity own a term so important. - Rachel Crawford

This, under no circumstances should be allowed to happen as it will prevent all cdh groups from around the world helping families who are affected by Congenital Diaphragmatic Hernia and the claim must be dismissed by the patent and trademark office and a phrase like this should not be used in this way. - Brenda Lane

My daughter is recovering from CDH & is only 3 wks old. Please help us raise awareness! Don't allow some organisation to own this title! - Rebecca Bolger

For those of us that care for these very special babies, this is truly one of the most selfish moves I have seen. If their motivation was to help families and patients, they have missed the mark. - Reed Dimmitt, MD

I AM STRONGLY AGAINST TRADEMARK OWNERSHIP. no one should benefit off the babies and there families pain and suffering. Leave things as they are. Its a hard enough time for families so why make it harder. Please have a heart and think about the children first before you think of money. - Leanne Brooks

I would like to think that the patent office would find this laughable even without a petition, but if a petition is necessary, sign me up. - Charles Hess

WOW, greed at it's finest. Please do not allow one company to monetarily gain by Copyrighting a term. The people who have the right to this "term" are the people who have lived it, the babies, the families, not some organization who is clearly out for themselves - Nadine Larsen

If this term can be patented, how soon will it be before someone goes to the dr. & the dr. says, "I can't tell you what's wrong with you or your child until I get permission from the organization that owns the name of it. And I can't begin treatment without that permission, because I can't tell any other person what it is." - Jeanne Hess

My baby grandson died from CDH in 2006 and I am totally against anyone owning rights to the title Congenital Diaphragmatic Hernia Awareness... it is appalling that any person or organization would try to limit awareness of this disease for their own selfish purposes. - Cynthia Hudson

this is a travesty! - Stephanie Achevich

No one should own awareness of a disease or birth defect. Families, doctors, etc should be able to freely use those terms, such as CDH, without any prior permission first. What a bogus notion, to own a birth defect or disease....what are those organizations thinking? - Lori Mulcahy

I work with CDH patients and have known Dawn and CHERUBS for many years. I have watched while small minded people try to discredit their work and I have watched other organizations form and fail because of their selfish intentions. Never in all my days did I expect to live to see something as selfish as what this group is doing to try to trademark CDH and other CDH groups doing nothing to stop this and letting CHERUBS do all the heavy lifting. Dawn I am so proud of all you have done and continue to do in putting these families and babies first. To all the families at CHERUBS and the volunteers; I say this to you: your courage in dealing with CDH and now your courage in the face of this horrible act makes your children proud and makes we care providers proud as well. - Jack

As the grandmother of beautiful Liviana Grace Price, a CDH baby, I am appalled that any organization or individual would presume to want to make it nearly impossible for others to use the term Congenital Diaphragmatic Hernia Awareness! Why would any entity, organization, or individual within an organization wish to prevent others from using this phrase? I often attach the CDH Awareness ribbon with Livi�s picture in emails to my friends and family when notifying them of Livi�s progress. I cannot tell you how many people are now aware of CDH because of seeing this little ribbon. The following is a quote from the petition filed by Breath of Hope, Incorporated, under �Describing Text� in their application: �Promoting public awareness of congenital diaphragmatic hernia; Public advocacy to promote awareness of congenital diaphragmatic hernia.� I believe this is exactly what every CDH organizations wishes to do! Why then would the Breath of Hope, Incorporated, feel the need to promote themselves as being the only organization doing so? For the Breath of Hope, Incorporated, to expect other CDH organizations to expend time and money applying for permission (and pay a fee!) to use these words reeks of selfishness and greed! I urge the U.S. Patent and Trademark Office to deny Petition No. 77436855. - Teresa J. Roberts

I think this is ridiculos. This organization is not the only orginization support families of children with CDH. This needs to be reversed so that everyone can benifit from the awareness programs for this birth defect. - Melissa DeDecker


No one organization/group/individual should "own" the sole right to use a MEDICAL PHRASE, especially in conjunction with "Awareness." This would affect so many people and groups who do much more for these causes than one organization/etc could do. - Kandy Smith

I cannot believe this idea even exists. It's RIDICULOUS to think someone can "own" CDH Awareness. THIS CANNOT BE ALLOWED! It's nothing more than a power/money grab. - Shawn Cote

As the mother of a child who was stricken with this devistating condition, I beg of you, please do not allow this to happen! - Corena Barbee

Wow - how low can you sink? Trademarking something that has such devastating effects on children. - Anne Marie Mulvey

This is ubsurd. No one should have the right to own this or anything like it. It is pure greed on behalf of the owner of Breath of Hope. They ought to be ashamed of themselves and get back to the basics on which they were based, helping others cope with their loss. - Jonathan Olson

I personally believe that any group must not have the ownership of the term "awarenes" of any birth defects, disorder or any form of disease. - Regina de los Reyes

an absolute disgrace that this should even be allowed or they should have even been able to put this application in - and a joke if it goes thro - samantha lloyd

No one should "own" the awareness of a disease! It will prevent all those who were touched by CDH from being able to raise awareness, fundraise, and the like without doing so through this said organization. Please don't allow this to happen. For all the babies who suffered, and the families who are still suffering today. - Lisa Slugoski

I do not believe access to the term: "Congenital Diaphragmatic Hernia Awareness" should be taken away or limited in any way from the organizations that support BABIES or their familes going through this devasating health issue . . . on behalf of Liviana Grace. - Debbie McGaffin

My son died in 1978 when he was 3 days old from a diaphragmatic hernia. I am against any organization that wants to "own" this term as a patent to make money. How ridiculous. - Vickie Martin

This is not fair and no one should profit from another's hardship. - Laurie Lloyd

Nobody should be able to "own" such a name. This is just crazy! Please don't let these people "own" this term, there are people that NEED to use this name in order to gain awareness NOT money! Compassion and awareness should come before greed and money. Please allow the victims and their families the ability to use this name in getting the word out about it. - Kerri Scheufler

Our little guy has CDH & a trademark on our condition and awareness is awful. - Nik Larson

I am a mother of a soon-to-be 11-year-old daughter born with CDH. We all need to work together to bring awareness of this terrible birth defect, and not undermine one another. - Sharon Munson

Please do not permit someone to own the trademark to the phrase, "Congenital Diaphragmatic Hernia Awareness." This can only do harm to babies and families by hindering awareness of and work done on this devastating defect. - Hafidha Acuay

What is Wrong With People??? Hope We All Can Get This Stopped! - Natasha Orona

it should be against the law to own the name of a medical condition the onyl thing that can come from it is more greed - jesse jones

CDH Awareness is for ALL families affected by this devastating birth defect, not one person looking for recognition. It is an absolute shame people do not all share the same goal... truly supporting ALL families affected by CDH - Brenda Slavin

This situation greatly disturbs me! My daughter Sofia was in the hospital for 7 months after birth an hour away from home because of her CDH . She barely made it with the limited availability of resources that there are to help the hospital staff. Her local medical staff that follows her now hardly even knows what her condition is. If these people get away with doing this it could prevent other babies from making it and prevent further proper care of her by her medical care givers that will be dealing with her from here on out! - Katie Carman

I have a grandson that was born with this. I can not believe anyone would even consider benefiting from something like this. I would sign a thousand petitions for this not to happen. Thanks to the Great Doctors and other organazations he is doing very well. - Sue Poshard

I pray that this petition is successful as well as serve as a means to end foolishness such as this - trademarking the name of a disease. God help us. - Kimberly Arundel

The teal/blue ribbon was created by my friend in memory of MY son Drew. It has ALWAYS been intended for FREE public use--by the creator (my friend) and owner (me). - Jana Lewallen

Owning awareness of a disease? Seriously? That's so wrong. - Lynnae McCoy

how can one benefit itself from loss and pain of others, is it ethical? - anita

This is disgusting. These people are horrible and God will see that they are punished for what they are doing to innocent babies and their families. They need psychiatric help. - Joan Johnson

No one orginization or person should be allowed the privilage of souly supporting or contributing or raising awarness for any cause. This is wrong for this woman and I think she is nuts if she thinks things will go in her favor. Where will humanity be if we can not choose to freely support causes because of people like this. - Misty Williams

An individual trying to make an issue out of a group that is trying to help and be supportive of others is the lowest form of being and not worth the time or effort - Aaron Moore

I do not know what to even say but, .HOW DARE YOU!!! - JESSICA BROWN

My granddaughter Claire jackson was supported so much by everyone and for someone to think they have the right to own this defect is just ludicrous - Sonya Graham

This is the most ridiculous thing I have heard in a long time. Our daughter was born and passed away having had CDH and I will use the term awareness anytime I please if it will help another parent. - Larry Childress

I think this is beyond why would someone take someone elses rights to use what ever they want . protecting babies in honor of Claire Jackson - Jessica Thoms

NO ONE has a right to own these words except maybe ALL the familes that are effected by this horrible birth defect. It is not right that someone would take this away from all of the familes by trying to own it. It degrades the struggles and suffering we all went through. Any organization or person who thinks they should be the only one to own these words is not an organization that cares about doing as much as they can for the defect and to spread awareness. This would hinder all the persons trying to raise awarness. Any organization or persons who would try to own these words would also not care about the familes that have suffered GREATLY under this defect. This is childish and I don't see how it would help children suffering from the birth defect. - Jennie

This is an afront to grieving parents especially, but also an unnecessary expense to our government system and the families/charity who must defend themselves against such action. How can anyone "own" awareness?? As a nurse I am appalled. - Greta Shealy

It should be against the law to do something like this and I hope to Jesus Christ that they do something about this soon.. - Debora Guadalupe

CDH Mom, have had wristbands made with CDH Awareness on them, and have raised so much awareness and support in our community. This is a horrible thing to think that someone would want to profit from this devistating defect. - Cassi Reed

I completely agree with this petition. No one should be allowed to profit from anyone's suffering, and everyone should be able to support and help others in need. I don't understand why someone would think it is alright to profit from others sickness and suffering. - Brandi Hash

Trying to copyright a "catch phrase" that is commonly used to refer to any specific disease/defect/syndrome, etc., seems to be self-serving for the organization seeking to do so rather than truly trying to raise awareness of the condition. Any creative organization should be able come up with a unique name to draw attention to their group without co-opting a phrase that is in general use. - Audrey S. McMahan

Stop this organization from owning a right that belongs to all of us! The right to raise awareness for a birth defect that we ALL have been affected by! - Amanda Turner

This is an egregious abuse of the copyright process, in that the only benefits by doing this will prevent the general public from using the phrase, including newspapers, discussion groups, forums, blogs, newsletters, etc. which also do their part to raise awareness about CDH. - Sonya Faust

Cherubs was the only place I could find for support when I found out my daughter would be born with CDH, this was in 2001. No one person or company should have any ownership to any phrase used in for medical advise or support. What benefit would there be for a trademark for "CDH Awareness"? Money, is the only thing that comes to mind... - Rhonda Steiner

No disease awareness should be trademarked. If the lady wants to trademark and organization...give it a name and use that. I think this could have major implications for more than just this single disorder. - Robin Norris

This is a medical term for a certain medical problem, and should not be used exclusively by any one group or organization,for profit or not for profit . Would you allow only only one company talk about treating Hypertension, such as AstraZeneca? - Walter Emmons

We lost our son Daniel Jens to CDH in 1975. I cannot imagine someone treating this condition as something to be owned. It's unconscionable. - Jackie Ekelund

this would be a terrilble thing to take away from people trying to raise awareness. - Dawn Garlick

My nephew has CDH and has been through a lot at such a young age. I think that it is disrespectful to take this right away from him and our families and the families of other children that have been affected. - Ashleigh Tate

No entity should own the the "awareness" of any disease or birth defect. Clearly, Breath of Hope is looking for monetary gain and it is quite unethical. - Crystal Hendon

I think that anyone who would try to trademark on awareness of an illness is a sad and sick person, especially when an organization to promote awareness is already in place....what would be the motivation? MONEY maybe and not the well being of sick sad! - Liz

No one should own a phrase that is linked to a disease that causes death's in children. My sister died of this Disease and to market her death for your own gain tells me you have no heart at all. May Satan tear your worthless soul apart. You people make me sick. - Shawn Bedient

As a member of both organizations, I will now be removing my name from Breath of Hope. This is reprehensible. - Lynne Neeley

As a pediatric surgeon, it is my duty to spread awareness of any congenital condition that threatens the lives of infants and children. Nobody should have an exclusive ownership of any words or phrases that may hinder the spread of knowledge. - Bryan C Weidner MD

The most important people are the bubs and their families. How dare someone try and own the right to the awareness. - sarah rawson

I would never had made it supporting my daughter and newborn grandson without Cherubs and other non copyrighted information about CDH - Kathleen OConnor

To effectively help people we must be able to spread the word in the largest possible group or chain, if it is truly the cause you care for and not yourself!! - Heather DeOliveira

Freedom of speech is a basic democratic right. People with concerns about any medical condition need to be able to communicate freely in order to learn about and discuss treatments, related events, experiences, contacts. Any interference with this basic right has no place in a democratic country. - Marlene Thoms

I think it is a shame the people would try to profit from a childs's deffect. The people who started this petition to patent this brithdeffect should be ashamed of themselfs!!!! My lady friends grandson has this deffect and his mom and dad have been through as much as any other parent of a child that his it . They aren't getting on the bandwagon to profit from their child and neither should anyone esle! - Tom Bayer

Surely CDH and AWARENESS are generic terms. Lolet's all work together to help this cause! - Lynne Marshall

I believe that no organization should own this phrase. It should be able to be used by anyone helping to raise awareness and support for research on what causes and what procedures will help these children. - Tonya Veltrop

Parents of affected children own this and any disease through their own blood, sweat and tears. No corporation should ever be allowed to own anything related to a specific disease that isn't the result of their research ie: medication, treatment equipment. - ronda capraro

This is horrible. I read the entire thing and all the links. What would possess someone to be that way? It sounds like a personal revenge plot and some crazy womans need for control. - Anna Roberts

This is ridiculous! NOBODY should own a phrase of any kind and especially not one that might be the very phrase that helps us find a cure for the devastating birth defect that took my son from me!!! To think that anybody thinks they have the right to own this phrase and would then sue in an attempt to profit from this makes me insane! CHERUBS is the ONLY reason I had any awareness of this birth defect during my pregnancy and without CHERUBS I would have been clueless and unprepared! CHERUBS has helped too many families using this very phrase and to know that somebody is able to turn around and attempt to sue CHERUBS which would be taking the very money used to raise awareness about this disease is a contridiction in the worst way and proof that no good will come from allowing anybody to own this phrase! And proof that there are NO GOOD intentions by this owner. I'm PISSED! I can't even think straight right now! And the thing bothering me the most is I recognize the name of the person doing this and I pray to god that I am wrong! PLEASE TELL ME I AM WRONG! Wasn't this person a member of cherubs!!!! Didn't this person gain awareness of this birth defect through cherubs? And is this person now using her childs birth defect for her own personal gain. I pray I am reading this wrong or have the name wrong! Either way this is the sickest thing I have ever heard! Start your own website, start your own awareness, the more the better but do not attempt to own it you stupid $*&^$*^% that prevents families from getting information they desperately need! You do not own MY Awareness!! It's MINE I own it! - Jennifer Wasik

Do not let them do this - my daughter has CDH and it is just as much my right to use "awareness" as anyone else's - they should not be the only ones allowed!!!! - Andrea Ryan

no one should be able to profit from the birth defect of a baby - Vicky Holliger

My wife told me about this and I thought that surely she was confused. I read the application. I read the legal threats. I read Breath of Hope, Incorporated's blog. Some one needs therapy and a visit to church. God help her as she obviously needs it. - Jeff Wilson

I am a CDH Grandma and want only the very best for the babies and families that have to deal with this. - Carolyn Dunn

No one person or organizations should hold the rights to the name of a birth defect. It would limit the awareness and support for the cause. This is ridicoulous that they could even do that. Not only would the person/company financially benefit from it but funding and research would suffer greatly because it would need rights/approval through one company. - Terri Belt

I agree, no one should be allowed to OWN awareness of any disease or birth defect. The very idea is ludicrous. - Mary Sizemore

My Granddaughter Bre Bre {Brianna} died from this and it was the hardest thing in the world to deal with. I do think that more people should be aware of this life threating problem. She is pictued above and she is still in our hearts. - Dana Mobley

Families affected by this have already gone through so much. The fundraising and generally public awareness belongs to them, not a corporation. Corporations should not be allowed to profit. The support and research belongs to people that are concerned about the babies, not the name of the birth defect. - April Sanchez

CDH is not something to make money off of. Everyone should be free to use the term - Deborah Albano

If this woman lost to or has a child with CDH, then I feel for her, however, she has no right to threaten the rest of us who have also lost children to CDH and have found our own network of help and support. I was not "aware" that CDH was as common as Spina Bifida, but I had heard of Spina Bifida and had never heard of CDH before my baby girl died of it. I think "Awareness" is for everyone to have and not to be controlled. - Angela Yap

My daughter is a CDH survivor, now 10 years old. It is so important for families and hospitals to be able to use CDH awareness, that for one person to trademark it is crazy. Without awareness imagine how many lives would be lost. There are still doctors out there who are not aware of this condition and it is still highly important for us to get the word out. - Kristin Garcia

My son was born with this condition, and no one should gain profit from this birth defect . Any money raised should be correcting problems and helping families and hospitals solving this problem. thank you - Karl Horvath

Why fight over the health of our children, when all that is to gain is money - Steve Inverarity

I am a Grandmother of a child who died from CDH at 18 days of age. I do not believe that anyone should profit from this or any disease. This is to help the parents and families understand and find support of the disease. - Debbie Heinrich

my daughter was born with a left sided hernia and very nearly lost her life ,this group is amazing and you should leave them alone,this is nonsense and we should all be allowed to use that term . - rebecca smith

It is just wrong to believe that someone group would profit from making others aware of a birhtdefect. I believe all should have a chance to bring hte awareness about. - Christina Harvey

This defect belongs to our children not EDP - Lise Dill

This is just absurd! - Toni Fiorillo

My Niece died of cdh 17 years ago. This woman trying to do this must be in my opion a selfish and crazy woman! - gabrielle majstorovic

I believe that CDH awareness should not belong to one person/organization. BOH should not be allowed to trademark Congenital Diaphragmatic Hernia Awareness. They should not be allowed to police how CDH Awareness is used. the fact that BOH has petioned to have fundraising removed form websites such as and show that this organization is in it only for themselves... - Paige Cox

Owning the a phrase that includes a disease name and awareness is an incedible thought to me. How someone could think this is OK is beyond me! I lost a daughter to CDH. It was not Breath of Hope that got me through my grief and provided me information. Them thinking that they have a right to own this phrase is rediculous to me. Phrases such as this should not be OWNED by anyone - they should be available for all to use to further the cause and help others. Shame on Breath of Hope for trying to stop the help for children and families impacted by CDH! - Amanda Owen

The phrase "Awareness" in any form is a communicative application. No organization should be allowed to copyright that, how absurd. - Dennis Owen

How very sad that one entity (Breath of Hope) would want to monopolize the wording used by others for fund raising of such a charitable cause; It makes one wonder what are their motives. - Karen Martin, APN

i am a CDH survivor. it saddens me that someone wants to OWN a name that defines the ability to spread the news and support about a defect that nearly killed me. - danielle swank

I am very shocked by this. My daughter died recently with a CDH. It is the most awful pain. However, knowing that there are organisations to turn to out there for help, clarification, support, is a comfort. I am sure BOH do some very good work - but why would they seek to restrict the other organisations that do equally good work. If they want to do something to unify the work each organisation does, thats commendable I guess, but do so properly, start a network, work out ways of working together. Surely theres a better way than their trademark approach!! It makes me very angry. - Anthony Vaz


My granddaughter (1-year old) is a CDH survivor. Thank God. Obvioiusly none of these people have ever had the experience of CDH in their lives... - JoAnn Solberg

No organisation should be allowed to do this, because the more people that raise awarness & give support the better for CDH. How can one organistion only raise awareness of CDH, the more organistions the better!!!! - Tracy Brookes

How can one organisation try to claim the rights to the name of condition & raising awareness??? Breath of Hope should be ashamed!!! There main concern should be helping people effected by CDH & raising awareness rather than spending their time trying to stop another organistion trying to do the same thing? - Adam Hawkes

I have a son who was born with CHD 3 years ago and I think it is very important for that we spread as much awareness about this condition as possible. It should not be limited to one group to do as they please, I dont think this is something anyone should OWN anyone who has had personal experience of this condition should surely appreciate as much awareness being made and dont see how the group such as Breath of hope has the right to deprive our children of this. I am a member of many of these groups inc. the above and it was from searching these on google that I came accross Cherubs and such like and was able to prepare myself for the birth of my son and to appreciate the condition and feel very privilaged to have him with me today when so many other families out there have not been so fortunte. - Mrs. Long

this is an awful violation of human rights . know one can OWN the awareness of anything . the next thing i know i could be sued for using the phrase "congenital diaphragmatic hernia awareness ". awareness is a basic human right . families of CDH children need as much awarness of information from all sources without being hindered by the monopolization or frivilousness. this is a life and death matter not a trademark . - dejah rogers

No one should own the right to awareness of a disease that strikes everyone, how crass and transparent... - Mary Ward

Im a mummy to a CDH angel & disgusted that someone could put a stop to raising CDH awareness. - Gemma Hawkes

Breath of hope, inc- you should be ashamed of yourselves! This is my little cousin you are using as a poster child for your organization of falsehoods and threats, with out the permission of her parents. Ever heard of Karma? You will no doubt find out about what goes around, comes around. - gayelynn garrison

Breath of Hope you should be ashamed of your selves.....You have no right to steal this trademark. I think God will take care of you for know one of the ten commandments is "Thou shalt not Steal"...this is plagarisim in the worst way. how cruel you of Hope, SHAME ON YOU....GOD HAVE MERCY ON YOUR SOUL!! - Susan Greene

Everyone should be made aware of this terrible condition. - Cheryl Penn

Trademarking a birth defect should be absolutely illegal. This is unconscionable. These people should be ashamed of themselves. - Antonia Cummings

How does cornering the market on a cause actually HELP the cause? You can own a birth defect! - Danielle Friedl

Makes my heart sad that we all have one thing in common CDH and our babies alive or angels but they will continue to make more heart ache by trying to block all the good that is intended by Cherubs. surley the money wasted trying to put a slur on chrubs would be better spent fighting CDH was this not the idea in the first place !!!! all against CDH. - M Branch

I think it is horrible and those people should be ashamed of themselves trying to prohibit others form using the name to raise awareness....The whole point is to raise awareness to hopefully find curable ways to fix this health problem so that families do not loose their babies .... - Leslie Thompson

This is ridiculous - lets help people and not try to own something that is more for help than for profit! - Beth A. Herrmann

The people behind the organization that wants to own the awareness of the disease or birth defect are blaspheming the holy ghost because they are hurting people by what they are doing and they are aware of it. Matthew 12:31-32 (Jesus says)- "Wherefore I say unto you, All manner of sin and blasphemy shall be forgiven unto men: but the blasphemy against the Holy Ghost shall not be forgiven unto men. And whosoever speaketh a word against the Son of man, it shall be forgiven him: but whosoever speaketh against the Holy Ghost, it shall not be forgiven him, neither in this world, neither in the world to come." - Mary Helen Burwell Smith

I think this is wrong entirely! - Becky Zachar



hopefully all who sign this petition (as I did) could still support the sale of somekind of ribbons or buttons that would serve to raise more funds to help the children. Pink ribbons sold to raise money to help women with breast cancer are not copyrighted or patented are they? - laurie wright

Awareness is just the beginning. A lot of attention and help needs to be directed towards these children. - Laura Dehart

It is sad that an organization would profit from the pain and suffering of babies and now allow everyone free access to the name to promote awareness. Shame on you Ms. Doyle-Propst! - Lester W. Neeley

Without this awareness i would have completely had no clue about it. This is a reckless trade mark and makes absolutely no since. We need to spread the word about this. - Melinda Adams


How can these peole help raise awaness, if they cant use this term, and how are they suposed to honor there children that have passed, I have not lost a child, but i have lost a brother, and i know it is hard, plese stop this for the families of these children, it is not fair to then not to be able to honnor them, - Felicia Fitzgerald

I think its nuts that someone can own a medical term that describes someones health issue. To stop parents from using this phrase when trying to explain their childs condition in letter, video or blog is purely nonsense. Its a medical condition/term. - Cheryl Ford

Thank you for standing up for our cherubs! God bless all the groups and people who stop this trademark so our cherubs can spread awareness! - Cathy Nelson

this is an outrage no one should be gaining from a birth defect that has taken and changed lives, our family will never be the same. all monies should be going to fighting this, more research and NOT to someones gain. - rebecca keenan

These are just a few of the 5000 signatures on the petition. Just a few. These are the words of CDH parents, grandparents, doctors, nurses and survivors. They are the people who should own Congenital Diaphragmatic Hernia Awareness.

An organization that truly cares about it's cause would listen to the people it is supposed to serve and not be self-serving.

Disclaimer - the views and opinions of those who posted on the Petition are not necessarily the views and opinions of CHERUBS, it's volunteers, board of directors, members or the other organizations leading the fight against this trademark