Friday, February 27, 2009

Quote Of The Day

"Our lives begin to end the day we stay silent about things that matter." - Martin Luther King Jr

Babies born with CDH can't speak for themselves. We can't stay silent.

Wednesday, February 25, 2009

Formal Letter to Breath of Hope, Inc. Requesting End To CDH Awareness Trademark

On February 24, 2009, the following letter was sent to the Board Members of Breath of Hope, Incorporated. It is our formal attempt to end this trademark issue peacefully and to request that their organization do what is best for all families affected by Congenital Diaphragmatic Hernia.

This is our effort to resolve this particular issue and end this trial and to save the entire CDH Community 2 years of USPTO trial dates and to use our time and resources to better help CDH families.

The trademark trial is continuing, and will go forward, unless Breath of Hope, Inc. decides to resolve this issue.

What happens next is up to Breath of Hope, Inc and it's Board Members.


Ms. Doyle-Propst,

This communication is only for mediation purposes of attempting to resolve the “Congenital Diaphragmatic Hernia Awareness” trademark issue. For the sake of having a peaceful dialog, we will keep this letter to the point and not comment on any other issues. We hope that you can do the same and help us to find a realistic and positive solution to this trademark issue.

The trademark on “Congenital Diaphragmatic Hernia Awareness” has been extremely detrimental to the entire CDH community. The “pinkwashing” excuse has failed to give any valid reasoning of why Breath of Hope, Inc. has filed the trademark on “Congenital Diaphragmatic Hernia Awareness”. The idea that anyone could own “Congenital Diaphragmatic Hernia Awareness” has deeply angered the majority of the CDH community, as it has hindered Congenital Diaphragmatic Hernia Awareness itself. Nothing good has, or could, come from this. It is our sincere hope that you will do what is best for the entire CDH community and remove this trademark.

CHERUBS, and several other CDH organizations, do not feel that we should have to ask permission from you or Breath of Hope, Inc. to use a common term that we all use daily. To ask us, CDH families and researchers, to do so can and will only hinder progress of spreading Congenital Diaphragmatic Hernia Awareness. If you have not already read the comments at we would like to ask you to do so. You can also read the comments at

Over 5700 CDH families, survivors, friends, pediatric surgeons, nurses and others have asked to stop this trademark – including many members of Breath of Hope, Inc (with some being past board members). It is from this group that we will pull witnesses that will tell the United States Patent and Trademark Office that “Congenital Diaphragmatic Hernia Awareness” is a common term.

On behalf of myself, CHERUBS and 1000’s of CDH families and medical staff, I would like to formally ask you to drop the trademark on “Congenital Diaphragmatic Hernia Awareness”. We all hope to work together to reach an agreement and better the CDH community.

If you agree to do so, we will agree to refrain from filing a Petition to Cancel on the “Congenital Diaphragmatic Hernia Awareness Day” trademark, even though we believe that every CDH family should have the right to participate without asking permission, being threatened or forced to give funds to Breath of Hope, Inc. We are all aware of your desire to own and control “Congenital Diaphragmatic Hernia Awareness Day” from other CDH organizations and, as an olive branch, are willing to allow the trademark for the day in lieu of the trademark on “Congenital Diaphragmatic Hernia Awareness” itself.

As always, all CHERUBS wants is for CDH families to have the support and information that they need, and to encourage Congenital Diaphragmatic Hernia awareness and research. We understand that this is the goal of all CDH organizations. We ask that you will reconsider this trademark and focus on doing what’s right for families affected by Congenital Diaphragmatic Hernia, and furthering the support that Breath of Hope, Inc gives. It is not our wish to hurt you or Breath of Hope, Inc. We simply have asked for this trademark to be canceled and the term “Congenital Diaphragmatic Hernia Awareness” returned to the community who has been affected by Congenital Diaphragmatic Hernia.

Dawn M. Williamson
President & Founder

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
3650 Rogers Rd, #290, Wake Forest, NC 27587
815-425-9155 Fax
CC - CHERUBS Parent Advisory Board, Breath of Hope, Inc. Board Members, United States Patent & Trademark Office File
BCC - CHERUBS Legal Team, CHERUBS Medical Advisory Board, Members of The Alliance of Congenital Diaphragmatic Hernia Organizations

Monday, February 23, 2009

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?

Saturday, February 21, 2009

(CDH) Pediatric Surgey Stories from Morgan Stanley Children's Hospital

Courtesy of Dr. Charles Stolar
Morgan Stanley Children's Hospital of New York - Presbyterian

Congenital Diaphragmatic Hernia (CDH) - Range of Outcomes

Courtesy of the UCSF Fetal Treatment Center

Congenital Diaphragmatic Hernia (CDH) - Fetal Intervention

Courtesy of the UCSF Fetal Treatment Center

Congenital Diaphragmatic Hernia (CDH) - Delivery

Courtesy of the UCSF Fetal Treatment Center

What is Congenital Diaphragmatic Hernia (CDH)?

Courtesy of the UCSF Fetal Treatment Center

Congenital Diaphragmatic Hernia (CDH) - Pregnancy Monitoring

Courtesy of the UCSF Fetal Treatment Center

CHERUBS New CDH Awareness Blogger Template

Like our new look? It's a look in progress but we hope to raise a lot of Congenital Diaphragmatic Hernia Awareness!!!

We're by no means blog template experts but we think we can help you to use this on your Blogger blog (this only works with Blogger - we're working on Wordpress templates still).

How to install this blog template:

#1. Please know that you'll lose your widgets if you install this (all the little cool squares on the side). But you can add them back after you install the template!

#2. Go to and save these files to your hard drive. This is the coding for the template that you'll need later.

#3. Go to your Blogger account and log in. Under the Dashboard you want to click on the Layout Tab. You want to choose Edit HTML

#4. Under "Upload a template from a file on your hard drive:" you want to choose and upload the cherubstemplate.xml file you saved in step #2. It may warn you that your widgets will be deleted, save it anyway.

#5. Still under the Layout Tab, now you want to go to Page Elements. You should see an element on the right named "HTML/JavaScript". Click on Edit on that element.

#6. A new window will pop up. Leave the title blank and under Content, copy and paste all the coding from the cherubsblog.txt file you saved in step #2. Save it and the window will close.

#7. Save your template by clicking on the Orange save button.

#8. To add the CDH babies being born counter, click on the Page Element that says "Congenital Diaphragmatic He..." and download and copy and paste this coding under Content.

#9. To join the CDH Blog Ring, you need to sign up and follow the directions found here. Paste that coding in the Element that says "CDH Blogs Ring"

#10. To add the Goodsearch and Goodshop for CHERUBS code, click on the Page Element that says "Goodsearch and Goodshop f..." and download and copy and paste this coding under Content.

That's it! Sound compicated? It's really not, we just wanted to be very detailed in instructions. :)

Hopefully this new template will raise lots and lots of CDH Awareness!

Friday, February 20, 2009

2009 Congenital Diaphragmatic Hernia International Conference Items Available!

CHERUBS 2009 International Member Conference Items now available on our cafepress store! Order some now and have them ready for our Congenital Diaphragmatic Hernia Conference in San Antonio, Texas on July 22 25, 2009! Wear them before and after the conference to raise Congenital Diaphragmatic Hernia Awareness!

Hat, shirts, stickers, sweatshirts, onesies, hoodies, bibs and much more!

"I Own Congenital Diaphragmatic Hernia Awareness" Video

Just a few of the "I Own Congenital Diaphragmatic Hernia Awareness" - videos by families, friends and medical care providers fighting the trademark on "Congenital Diaphragmatic Hernia Awareness" by Breath of Hope, Inc.

To participate e-mail your video file to with your cherub's name and info and the name(s) of those in the video. The script is "I (or we) Own Congenital Diaphragmatic Hernia Awareness"

Congenital Diaphragmatic Hernia Awareness Tattoos

Just look at what some of our members will do to raise Congenital Diaphragmatic Hernia Awareness!!

We have some members at CHERUBS who raise Congenital Diaphragmatic Hernia Awareness ALL the time! :) These brave and amazing moms and dads have gotten tattoos of our Congenital Diaphragmatic Hernia Ribbon and other logos!

Dave Holt, in honor of his son, Braden

Stephanie Olivarez, in honor of her daughter, Shelby Olivarez

Corin Nava, in memory of her son, Gabriel Nava

Barbara Wagner, in honor of her son, Logan Wagner

Megan Bradshaw, in honor of her daughter, Alyssa Bradshaw

Danielle Boyle, in honor of her son, Connor Boyle

CHERUBS Valentine's Day Fundraisers

This year, several of our members convinced their local stores to sell Valentine's Day posters in honor / memory of their cherubs to raise money for CHERUBS. Below are photos from just a few of these fundraisers! The photos below are fundraisers in memory of Caleb Cox and in honor of Logan Wagner.

The best thing about this fundraiser is they raised TONS of Congenital Diaphragmatic Hernia Awareness!!!! Along with the "valentines" displayed were posters explaining what CDH is! Thank you to all the families, friends and establishments that made our first annual CHERUBS Valentine's Day Fundraiser a success!!!

Kohl's Department Store Volunteer Day

On February 16th, we were blessed with 10 volunteers from Kohl's Department Store! For 3 hours we talked about Congenital Diaphragmatic Hernia, folded brochures and held our CHERUBS Phone Survey. Our volunteers called 100's of CHERUBS members in those 3 hours, asking them about our services and what more we can do to help CDH families. We learned a ton and will have those statistics posted soon.

Our local district stores at Kohl's, and especially our new Wake Forest, NC store, have adopted CHERUBS and we will be working together about once a month on many different projects and events through the year. We are so very, very appreciative for all they are doing for CHERUBS and for CDH families. They are such an incredibly kind and wonderful group of people and we are proud to work with each of them!

CHERUBS 2009 International Member Conference

Finally, it is all finalized and we have the hotel information! I will be posting more information (driving directions, etc) soon.

The Holiday Inn Select San Antonio Airport
77 NE Loop 410
San Antonio, TX 78216

CHERUBS Room Rate is $89.00
CHERUBS Room Rate + Breakfast for 2 adults is $97.00

Breakfast is not free with your room! I'm sorry, we tried, but this is the best we can do! Feel free to bring milk, cereal, etc if you want to save money! I think kid's do eat free in the dining room (per their site).

Rooms come with coffee makers, microwaves and mini fridges. There is a pool, restaurant, bar and fitness center. Free internet.

To receive the CHERUBS discount you *MUST* tell them you are CHERUBS members when you book the room and you must book it for July 22-25th or longer. We have to book 25 rooms to get our discounts and freebies so please, please, PLEASE stay at this hotel!!! It's definitely the best value around anyway!!! :)

I was planning on rooming myself with another mom but because we need to book those rooms I'm now booking my own room. I know several of you are rooming but please reconsider if you can afford it (we totally understand if you can't! We just want you to attend either way!).

We worked really hard to find a decent, safe hotel that was inexpensive and we hope we did ok. It's not glamorous but then, we didn't want our members paying $150 a night to stay on the Riverwalk. This hotel is near the airport and includes an airport shuttle and will also go anywhere in a 2 mile radius of the hotel (that's not including the Riverwalk or Sea World, but does include the malls).

They have been very generous to us and are allowing us a FREE suite for the kids during the conference and are only charging us a cleaning for the Meeting Room... that's saving us $1000's!!! So a huge thank you to the Holiday Inn Select!!!

We're working on the conference web site and brochure, as well as locking in our 3 speakers and kid's entertainment.

Tentatively, here's our schedule:

July 22, 2009 - Check In
July 22, 2009 6:00 pm to 9:00 pm - Pizza Party and Introductions
July 23, 2009 8:00 am to 12:00 noon - Conference
July 24, 2009 8:00 am to 12:00 noon - Conference
July 25, 2009 8:00 am to 12:00 noon - Conference
July 25, 2009 - Check Out

That gives everyone the afternoons & evenings to go play.

Our guest speakers will speak on CDH Research, Genetics and Repair - including the head of the CDH Study Group, Dr. Lally. Round table discussions will be held for both parents of survivors and grieving parents.

There will be free babysitting during conference hours for the kids (volunteers needed!) and entertainment for them too (clown, magician, etc).

There is no conference fee, you just have to be a member of CHERUBS to attend!

You are responsible for your own lodging, food and other travel costs.

We are working on discount tickets for the local attractions. I have to say that the San Antonio Tourist Bureau has been AMAZING!!!! They will be sending all of our member info on the conference and San Antonio at no cost to CHERUBS!!! :)

So far it looks like there will be about 150 in attendance!!! We have members coming in from Australia, Mexico, Great Britain, Canada and Italy as well!!! This is truly a CHERUBS INTERNATIONAL Conference!!! :)

We hope to see you all there!!!

Friday, February 13, 2009

CDH Research Survey Software

CHERUBS is thrilled to announce that the CDH Research Survey Software Company has granted our charity a discount to help our cause! Instead of the $6000 a year that we expected to pay, is allowing us to use their software for just $1000 a year - saving our non-profit organization $5000!!! We are so grateful for the assistance! QuestionPro is the top Research Software On-Line - the one we have been comparing all other software to. We didn't dare dream that we'd be able to do this research so soon, saving so much money!

Thank you QuestioPro for your generousity and for helping CDH families around the world!

Our CDH Research Site programming will begin next week!

CHERUBS Survey - Some members may receive phone calls this Sunday!

Some of our members in the U.S. may receive phone calls this Sunday, February 15th, about CHERUBS. We have a staff doing a survey on our services and what we can do to be a better organization. They will be making random calls to members in the United States only. Please feel free to be honest and help us to help you! :)

New CDH Awareness Video - we need your help!

I'd like to put together a video of CDH families to stand up to this Congenital Diaphragmatic Hernia Awareness trademark. I would like *ALL* CDH families to participate! Not only will be this good for standing up to this trademark but for awareness in general.

To participate, send in a video clip just a few seconds long to Make sure to include your name and your cherub's name!

The video should include you, your cherub or your family just standing / sitting and saying "I own Congenital Diaphragmatic Hernia Awareness". Or "We own Congenital Diaphragmatic Hernia Awareness" if there more than one person in the video.

Young CDH Survivors - Videos of CDH survivors saying this would be great... especially the little ones looking all cute! :)

New Parents - videos of parents saying this in the NICU beside their cherubs would be great. The whole NICU experience and dealing with CDH is what is we're trying to raise awareness about!

Expectant Parents - show off that tummy and say it! :)

Grieving Families - hold a photo of your cherub and say it or stand at the cemetery or whatever you want to do to get the point across that this is a deadly birth defect and awareness is crucial.

You don't have to be professional to take the video. You don't have to be glammed up or in a studio. Just be yourselves!!! Use any video camera at all, it doesn't have to be perfect quality.

The video will include your photos and a few slides about what CDH is. It will also include 1 or 2 slides stating that we are fighting to stop the trademark. CDH families and organizations (those not involved in helping BoH) are invited to participate.

This video will be posted on YouTube, our sites, blogs, Facebook, Myspace, etc. You'll be able to post it yourselves to wherever you'd like as well. This video will also be sent to the Board of Directors at Breath of Hope, Incorporated as a plea to get them to knock off this trademark nonsense.

We'd like to get at least 50 families participating! Deadline to get your video in is February 25th!

Feel free to post this to your blogs, myspaces, facebooks, etc or send it to other CDH families!

Videos of Cherubs - Sneha Anne Senthil

Videos of Cherubs - Caleb Cox

Videos of Cherubs - Ian Meats

Videos of Cherubs - Gregory Zion Couret

Wednesday, February 11, 2009

Great Quotes

For families dealing with Congenital Diaphragmatic Hernia. For the entire CDH community fighting the Congenital Diaphragmatic Hernia Awareness trademark. And just great quotes for life in general.

"In the End, we will remember not the words of our enemies, but the silence of our friends." - Martin Luther King Jr. (1929-1968)

"Problems worthy of attack prove their worth by fighting back."
- Paul Erdos (1913-1996)

"Good people do not need laws to tell them to act responsibly, while bad people will find a way around the laws." - Plato (427-347 B.C.)

"If you are going through hell, keep going." - Sir Winston Churchill (1874-1965)

"Some cause happiness wherever they go; others, whenever they go." - Oscar Wilde (1854-1900)

"When you do the common things in life in an uncommon way, you will command the attention of the world." - George Washington Carver (1864-1943)

"An inconvenience is only an adventure wrongly considered; an adventure is an inconvenience rightly considered." - Gilbert Keith Chesterton (1874-1936)

"It's kind of fun to do the impossible." - Walt Disney (1901-1966)

"The true measure of a man is how he treats someone who can do him absolutely no good." - Samuel Johnson (1709-1784)

"Many a man's reputation would not know his character if they met on the street." - Elbert Hubbard (1856-1915)

"The significant problems we face cannot be solved at the same level of thinking we were at when we created them." - Albert Einstein (1879-1955)

"First they ignore you, then they laugh at you, then they fight you, then you win." - Mahatma Gandhi (1869-1948)

"Obstacles are those frightful things you see when you take your eyes off your goal." - Henry Ford (1863-1947)

"Sometimes it is not enough to do our best; we must do what is required." - Sir Winston Churchill (1874-1965)

"The only thing necessary for the triumph of evil is for good men to do nothing." - Edmund Burke (1729-1797)

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." - Albert Einstein (1879-1955)

Tuesday, February 10, 2009

Congenital Diaphragmatic Hernia Blog Ring

We have started a new blog ring for CDH families so that we can all keep up with blogs and CDH families and make sure to send well wishes and prayers to those who need support and encouragement.

You sign up for free at

Congenital Diaphragmatic Hernia Awareness Trademark - Court Begins

Court starts tomorrow everyone!!!

I'd like to ask you all to please say a prayer that Breath of Hope, Inc will help to resolve this trademark issue peacefully and also I'd like to ask everyone to please use the Congenital Diaphragmatic Hernia Awareness Ribbon in your on-line profiles (Facebook, Myspace, Blogs, etc) tomorrow to show unity against the trademark on Congenital Diaphragmatic Hernia Awareness. Raise a little awareness while trying to save CDH awareness. :)

If you need a ribbon you can use any posted here or you can have a personalized one made by sending your cherub's photo, name and date(s) to

1:00 pm EST tomorrow, February 11, 2009 .... please say prayers for all CDH families that this drama may end.

How else can you help? Sign the petition and invite family and friends to sign.

Ask Breath of Hope, Inc and it's board members why this trademark and attacking other CDH organizations and parents with legal threats is necessary. Under their "company profile" you can see their current Board of Directors:

Elizabeth Doyle-Propst (CEO, Primary Director) -
Marsha McInnis (Director) -
Rick Bryant (Director) -
Jennifer Luning (Director) -
Jean Ashner (Director) -
Holly Centurino (Director) -

We suggest finding other ways to contact the board (Myspace, Facebook, personal e-mail) as there is no guarantee that their BoH e-mail addresses are real or that mail is not filtered by the CEO. This has been suggested by former BoH Board Members. We will not post their private e-mail addresses.

Thank you everyone for your support throughout this ordeal and for all you are doing to help CDH families!!!

Friday, February 6, 2009

Congenital Diaphragmatic Hernia Awareness Trademark

Court starts next week so this is everyone's last opportunity to sign the petition against the Congenital Diaphragmatic Hernia Awareness Trademark and take a stand against the corporation who wants to own and dictate CDH awareness.

If you haven't signed it yet, now is the time to do so. For every baby, family, organization and researcher who deals with CDH.

CDH Awareness should not be owned by anyone. It belongs to the babies and families who deal with it every day.

Wednesday, February 4, 2009

Personalized Congenital Diaphragmatic Hernia Awareness Ribbons

CHERUBS will personalize a Congenital Diaphragmatic Hernia Awareness Ribbon for any CDH family for free.

To get a free ribbon, send your child's photo, name and date(s) to You should receive it within a week. Within 2 weeks it will appear on our cafepress shop where you can order items with your ribbon:

A special thank you to Barb Wagner and Fernanda Arce for creating the ribbons for us! We have personalized ribbons for over 100 CDH families so far!