Resources for Families Dealing With Congenital Diaphragmatic Hernia

I’ve been told today in several ways that our resources are hard to find – since so many new and expectant families had no idea we offer so much! So I wanted to make a list of what we offer and a link to the services to make it easier:

Our Web Site – more information about CDH than anywhere on the net with 1000’s of pages! http://www.cdhsupport.org

All About CDH – information, diagrams, videos and more. http://www.cdhsupport.org/cdh/index.php

CDH Forums for Families – over 100 posts each day, 100’s of topics. Get advice, help, info and support 24/7 from parents who have been in your shoes. Membership is FREE and it is all confidential. http://www.cdhsupport.org/members

CDH Parent Reference Guide – simple, easy to understand information on CDH written for parents whose babies were newly diagnosed. http://cdhsupport.org/members/dload.php?action=file&file_id=32

CDH Brochure – in 4 different languages http://cdhsupport.org/members/dload.php?action=category&cat_id=10

CDH Research – research library, survey results and coming very, very soon an interactive CDH research survey for parents and researchers http://www.cdhresearch.org

Newsletters full of stories, news and much more –http://cdhsupport.org/newsletter/

International CDH Conference – members from several organizations and CDH researchers coming together http://www.cdhconference.org

Congenital Diaphragmatic Hernia Day – May 17, 2009 http://cdhsupport.org/members/portal.php?topic_id=3012

CDH Events – tons and tons of events and get-togethers and fundraisers around the world http://cdhsupport.org/members/viewforum.php?f=184

State & International Representatives – find local support. http://www.cdhsupport.org/volunteers/reps.php

On-Call Parents – need to talk to someone? They are on-call for you. http://www.cdhsupport.org/volunteers/oncall.php

Videos of Cherubs – dozens of videos of cherubs, events, and more. http://www.youtube.com/user/cdhsupport

CDH Photo Albums – 100’s of photos of children and adults born with CDH http://cdhsupport.org/members/album.php

CHERUBS Adopt A Hospital Program – help us to help families around the world by adopting a hospital to provide materials to for new CDH families http://cdhsupport.org/members/portal.php?topic_id=3013

Our Bloghttp://cdhsupport.blogspot.com

Free On-Line Albums for CDH Familieshttp://cdhsupport.org/members/album_personal_index.php

Free Blogs for CDH Families – keep your family and friends updated with these free blogs on our CDH informational site so they can also research! http://cdhsupport.org/members/weblogs.php

CDH Blog Ring – group of CDH blogs written by parents http://www.ringsworld.com/cdhblogsring/home.html#2

CDH Awareness Ticker – drop by and see how many babies have been born with CDH since 2000 as a new baby is diagnosed every 6 minutes somewhere in the world. http://cdhsupport.blogspot.com/2009/04/over-half-million-babies-born-with.html

Research Library – add your links or view the links of others to CDH research articles and sites. http://cdhsupport.org/members/links.php

Personalized CDH Awareness Ribbon – Order a personalized ribbon with your cherub’s name, date(s) and photo – send them to ribbons@cherubs-cdh.org

“Stories of Cherubs” Vol. I & II – full of stories of 100’s of families who have dealt with CDH http://www.cafepress.com/cherubs/6191951

CDH Calender – featuring 100’s of faces of children born with CDH http://www.cafepress.com/cherubs.337095355

Congenital Diaphragmatic Hernia Awareness Items – including Clothes, Bibs, Maternity Shirts, Totes, Journals, Posters, Hats, and much, much, much more – http://www.cafepress.com/cherubs

CDH Awareness Ribbon Car Magnetshttp://www.supportourribbons.com/m/160153 Also available in a larger size

CDH Awareness Ribbon Buttons – just 18 cents each!!!! http://cdhsupport.org/members/viewtopic.php?t=3001

CDH Awareness Bracelets – pink, blue and yellow silicone bracelets that say “CDH Awareness” http://cdhsupport.org/members/viewtopic.php?t=2436&start=165

CDH Awareness Postage Stampshttp://www.zazzle.com/cherubs

CDH Awareness Mailing Labels – download and print for free! http://cdhsupport.org/members/dload.php?action=category&cat_id=17

Random Acts of Kindness CDH Awareness Cards – there is no nicer way to raise awareness! http://cdhsupport.org/members/dload.php?action=file&file_id=85

CHERUBS Facebook Group – talk to other CDH parents on Facebook http://apps.facebook.com/causes/44070/11273893?m=6d54c0aa

CHERUBS Myspace Page – talk to other CDH parents on Myspace http://www.myspace.com/diaphragmatichernia

More Downloadable Info – info on where donations go, our non-profit paperwork, older newsletters, event brochures and more! http://cdhsupport.org/members/dload.php

This is just a small list of what we offer and doesn’t even include most of our awareness activities and projects. Drop on by our site and take a look at how CHERUBS has been helping families deal with Congenital Diaphragmatic Hernia for 14 years.

“I Own Congenital Diaphragmatic Hernia Awareness” Video

Starring over 300 CDH families in the fight against the trademark on “Congenital Diaphragmatic Hernia Awareness” filed by Breath of Hope, Incorporated.

http://www.ipetitions.com/petition/cdhawareness/
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
http://www.cdhsupport.org
http://www.cdhresearch.org

CHERUBS Phone Survey Results

On February 15th, Kohl’s Department Store volunteers conducted a phone survey of CHERUBS members. They called over 250 random members located in the United States. The results are as follows:

Question #1. Are you happy with CHERUBS services?

We had requests for more local events and more newsletters.

Question #2. What other services would you like to see?

Again, we had requests for more local events and more newsletters.

Question #3. Do you plan on attending the 2009 Conference in Texas?

Question #4. Would you be interested in participating in a CDH Research Survey this year?



Question #5. Would you be interested in donating $20.00 a year to help our charity?

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.

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.

Congenital Diaphragmatic Hernia Forums

We have dozens of forums at CHERUBS for CDH families and medical care providers. There are over 2600 registered families and medical care providers, 100’s of topics and over 39,000 posts! You can’t find more CDH information and support than that! 🙂

http://www.cdhsupport.org/members

Only 5% of our forums are public so make sure to sign up to see all the great information and support! Membership is free.

There is an approval process which can take up to 48 hours so make sure to fill out your form thoroughly to speed up the process. All information is 100% confidential and is not given or sold to anyone or any other group or business. We value our members’ privacy and safety, which is why we verify each new member. Information on your membership form is also used for CDH Research so you not only get wonderful information and support but you help CDH research as well!

Our Forums (Public ones marked – all others are members only)


CHERUBS FORUM INDEX

News & Events

CHERUBS News (Public)
Updates on our organization, CHERUBS! Research, web site, newsletters, media, finances, legal, etc. If it’s new, you’ll find it here!

In The Media
The latest articles and shows involving CDH and/or CHERUBS members

Web Site News, Questions, Issues, Etc
Web site updates, issues, additions and general web site news.

CHERUBS Conferences & Get-Togethers
National & International Member Conferences as well as State and Local Get-Togethers

How You Can Help

Awareness Activities, Fundraisers, Angels for CHERUBS and more! (Public)
Yes, YOU can make a difference in the fight against CDH! Creative ways to volunteer, info on where donations are needed most, our Angels for CHERUBS Program and much more!

CHERUBS Member Input
Polls, helping us with printed materials, donation lists, new siblings, etc

Meet Our Cherubs

Stories of Cherubs (Public)

Stories of Survivors (Public)
Stories of surviving CDH patients already printed in our newsletter, “The Silver Lining” and our book, “Stories of Cherubs” Please do not post your stories here (we’ll post them for you after they are published) but please feel free to add updates to your stories or comment on other stories by using the Reply button on story post.

Stories of Cherubs In Heaven (Public)
Stories of CDH patients lost that are already printed in our newsletter, “The Silver Lining” and our book, “Stories of Cherubs”. Please do not post your stories here (we’ll post them for you after they are published) but please feel free to add updates to your stories or comment on other stories by using the Reply button on story post.

Meet Other Parents

Introductions
EVERYONE please introduce yourself & meet other parents here! This forum is now used to replace our old Main Listserv.

Meet Other Parents Expecting Cherubs
Forum for parents Expecting CDH babies

Meet Other Parents of Surviving Cherubs
Meet the families of other surviving cherubs

Meet Other Grieving Parents
Forum for those who have lost their cherubs

Parents Who Chose To Let Go Early
A judgement-free place for those that chose to terminate a CDH pregnancy

Dad’s Place
A place for dad’s to talk about CDH or sports or whatever they want.

Grandparent’s Gathering
Grandparents have a double-dose of worry to deal with; worrying and sometimes grieving their cherubs and worrying and want to make it all ok for their children who are the parents of their cherubs. Here they can support each other and offer advice and info.

Kid’s Korner
Place for kids 10 and over to talk to other cherubs and siblings.

Expecting Babies After CDH
Having children after having a child with CDH

Trying To Conceive
Trying to have another baby after dealing with CDH (survivors & non-survivors)

Marriage & Relationship Issues
Having and/or losing a very sick child can wreck havoc on even the strongest relationships. Here you can talk without judgement and hopefully gain some info and support to help .

Inspirational Words
Inspirational stories, quotes and poetry. Please reference authors!

Prayer Requests
Prayer and well-wishes requests for CDH patients having trouble, family and friends and all other prayer requests

Non-CDH / Miscellaneous
For discussions other than CDH. Laugh about your kids antics, cry about losing a loved one, vent about your boss… just respect the site rules and you can write about anything here.

More Medical Info & Support

In Utero Procedures
For families of cherubs who had in utero repair, tracheal ligation or other in utero procedures

CDH & ECMO
Dealing with CDH and Extracorporeal Membrane Oxygenation machines.

Feeding Issues
Dealing with oral aversions, NG-tubes, G-tubes, Mic-Key buttons, feeding therapies, etc

Developmental Issues
Dealing with developmental delay, cerebral palsy or other cranial, cerebral or behavioral issues

Long Term Pulmonary Issues
Dealing with asthma, lung function tests, vent or oxygen dependency, and other lung issues.

CDH & Syndromes
Dealing with CDH and syndromes or chromosomal abnormalities

Multiple Births
CDH within mulitples – twins, triplets, quintuplets, etc

Other Medical Issues
Dealing with chest pectus, scoliosis, allergies or any other medical issue

CDH & Growing Pains
Growing up after having CDH is still an uncharted territory. Here you can talk to other parents about dealing with puberty, playing sports, having children of their own and much more.

More Than 1 Cherub
Families dealing with more than 1 CDH baby (2% odds)

Medical Care & Insurance Praises / Comments
Parent opinions on hospitals / doctors / nurses and other medical care providers.

Other Conferences
Medical conferences, grieving parent conferences, etc

CDH Research

Research and info on Congenital Diaphragmatic HerniaResearch Studies (Public)
Research Studies actively recruiting CDH patients / families

CHERUBS CDH Research
CHERUBS CDH Research Survey, collaborations on CDH Research with other organizations and other information.

Research Links
Links to research papers on CDH

Research Papers
Research papers, articles, and more – also see Research Links!

States & Countries

United States

For members in the United StatesNortheastern USA

~ Northeast USA
Forum for all members in the Northeastern United States

Connecticut
Forum for members in Connecticut

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Forum for members in Massachusetts

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Southern USA

South United States~ South USA
Forum for all members in the Southern United States

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~ Midwest USA
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~ West USA
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Australia
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CHERUBS Volunteers

Meet our wonderful volunteers and learn how you too can help at CHERUBS!Meet Our Wonderful Volunteers!

Volunteer Comments, Recruitment and Information
Want to praise your state rep or find out who to thank for that holiday card? Want to see what positions need to be filled? Here is the info! 🙂

Congenital Diaphragmatic Hernia Awareness Trademark is UNETHICAL

Posted on Breath of Hope Incorporated’s blog:

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

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

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

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

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

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

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

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

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

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

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

————————————————–

A few facts we should all be aware of:

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

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

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

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

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

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

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

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

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

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

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

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

http://www.ipetitions.com/petition/cdhawareness/index.html

Dawn Williamson
CHERUBS President & Founder
http://www.cdhsupport.org
http://www.cdhresearch.org

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

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