Wednesday, February 29, 2012

Support CDH Awareness On Twitter!

On twitter?? Here's another way to show your support for CHERUBS - Congenital Diaphragmatic Hernia Research, Awareness and Support. Now you can donate a tweet per day to CHERUBS through Show your support today! Just follow the link and click "donate a tweet".

Tuesday, February 28, 2012

Google Doodle for CDH

(Letter from Dawn)

Alrighty folks, we have a mission to accomplish!!!! Can we all e-mail Google and get them to do a Doodle for April 19th??? 

My e-mail to (write your own. Keep it simple!)....

Dear Google,

April 19th in the International Celebration of Congenital Diaphragmatic Hernia Awareness Daily. CDH is a severe birth defect that strikes 1 in every 2500 babies = a baby every 10 minutes in the world. 50% of babies born with CDH do not survive. The cause is unknown.

Never heard of CDH? Most haven't, though it's as common as Spina Bifida and Cystic Fibrosis with over 700,000 babies affected since 2000. Here at CHERUBS we've struggled to raise awareness for 17 years. Without awareness there are no research funds.

A CDH Doodle would raise awareness on an astronomical level for these babies and get them the attention and help they so desperately need. What better reason to doodle and who can resist cute little cherubs (the symbol for CDH) or the ribbon with the baby colors and clouds on a pretty spring day in April?

Please consider this proposal.

On behalf of over 3800 families of babies born with CDH,

Dawn M. Torrence Williamson
President & Founder
mom to Shane (1/28/93-9/11/99), born with CDH

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Phone - 919-610-0129
Fax - 815-425-9155
Mailing Address - 3650 Rogers Rd #290, Wake Forest, NC 27587, USA
Office: 1725 S. Main St, Suite 202, Wake Forest, NC 27587

More Doodles

Tu B'Av 2011 
Uruguay Independence Day 2011 
Swiss National Day 2011 
Celebrating the Wildebeest Migration by Samuel Githui

Monday, February 27, 2012

April 19th Parade of Cherubs in Washington DC - International Congenital Diaphragmatic Hernia Awareness Daily Celebration

CDH Awareness
April 19th Parade of Cherubs in Washington DC
International Congenital Diaphragmatic Hernia Awareness Daily Celebration

Join us as we march in the Parade of Cherubs from the Lincoln Memorial to the Washington Monument to Capitol Hill where we will meet with Congress and raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill.   Everyone is welcome to participate. 

When - Parade starts at 10:00 am at the Lincoln Memorial in Washington, DC on Thursday, April 19, 2012On Friday, April 20th we will visit the White House.

Where - a full parade route will be posted soon, as well as information on stops on the DC Metro so you can park and ride into DC.

What - we will march 2.7 miles from the Lincoln Memorial to the Washington Monument, past the White House to Capitol Hill.  At Capitol Hill, we will tour and meet with Senator Jefferson Sessions, sponsor of our CDH Research Bill.   Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness.

CDH AwarenessWho Can Participate - anyone who wants to raise CDH Awareness.  You MUST register with us to participate!  You MUST fill out a form (to be posted soon) before February 29th for us if you wish to tour the Capitol and White House with us.

What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon.  All children are encouraged to wear wings.  Wings stand out better on bright colored clothes.  Wear comfortable walking shoes!  For the White House visit on Friday, please also wear CDH Awareness Gear!

What Not to Wear - Anything trademarked or copywritten materials or phrases.  No turquoise please. 

Wings - you can borrow wings at breakfast at the hotel at 8:00 on April 19th or purchase your own wings at

Accomodations - we are currently working on hotel discounts.  They will be posted by February 20th.

Special thanks to Mandy Sroka Photography for being our official photographer for the even, Chic Events Productions for all their planning help and Alarm Security for sponsoring the wings!

Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness!

CDH Kids Song

I'm a real live cherub but I don't have wings
When I was a baby the doctor had to fix things
My tummy was in my chest and it was hard to breathe
He put it all back and here's where he fixed me!

Congential Diaphragmatic Hernia Research Bill
In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.
Sponsor - Sen. Jefferson Sessions

CDH affects 1600 babies in the United States every year, with a 50% mortality rate.  It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth.   The cause of Congenital Diaphragmatic Hernia is not known.   There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida.   More research funds are desperately needed and we are appealing to the United States government to help these babies.

  1. Look Up Your Congressmen To find his / her mailing address
  2. Download Letter to Send To Your Senator / Congressman
  3. Include The CDH Research Bill and a photo of  your cherub
  4. Sign the CDH Research Bill petition and ask others to sign as well!

Free Facebook Cover Banner:

CDH Awareness
 CDH Awareness
Order commemorative CDH Awareness Gear

Feel free to download this shirt graphic to raise CDH Awareness:

Congenital Diaphragmatic Hernia Awareness

CDH Awareness - St. Louis, Missouri Parade of Cherubs

Join CHERUBS & St. Louis Fetal Care Institute in the first annual Parade of Cherubs to raise awareness of Congenital Diaphragmatic Hernia!!!!

ALL CDH families and friends are welcome to participate!!! ALL CHILDREN ARE WELCOME TO WEAR WINGS!!! Including siblings, cousins, friends, etc. Adults welcome to wear wings too!

Everyone, please also wear appropriate CDH Awareness gear ( and the cloud CDH ribbon! Free graphics you can use can be found there as well.

Wings can be purchased at

Sunday, February 26, 2012

Congenital Diaphragmatic Hernia Totebag Drive

CHERUBS H.O.P.E. (Helping Other Parents Expecting) Totebag Program assists families expecting babies born with Congenital Diaphragmatic Hernia by providing them with much needed free information and support items through a community project in which all CDH families can participate and honor their children while helping new families affected by Congenital Diaphragmatic Hernia.

Donated items are collected by our members, CDH families and friends and put together into totebags by volunteers. Totebags are then mailed to families who are expecting babies born with CDH or who have newborns still hospitalized and battling Congenital Diaphragmatic Hernia.

Congenital Diaphragmatic Hernia (CDH) is a devastating birth defect that affects 1 in every 2500 babies. CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. The cause is not known.

50% of babies diagnosed with CDH do not survive. Of those that do survive, sometimes long hospitalizations and other issues occur. It is incredibly important for CDH families to have accurate information of all the treatments for Congenital Diaphragmatic Hernia so that parents can make informed decisions for the babies' care. Items included are a CDH Awareness Ribbon totebag, personal care items for baby and information for the parents and family. Our CDH Baby Book is over 200 pages of valuable CDH information and advice.

Over 100 new and expectant CDH parents join CHERUBS each year. This project was created for them, to help them through the first few weeks and months in dealing with Congenital Diaphragmatic Hernia.

These bags will ONLY go to families affected by Congenital Diaphragmatic Hernia. They are sent only to expectant moms and those with newborns under 3 months old as these items are meant to be used during neonatal hospitalization.

They will be sent out to families in the United States & the United Kingdom as they join CHERUBS membership. We hope to add more countries soon, as our International Representatives take on this project in their countries.

For more information on CDH and CHERUBS, you can visit our site at

If you would like to make a tax-deductible donation of items or money, you can mail it to:

3650 Rogers Rd #290
Wake Forest, NC 27587

c/o Clair Maher

Saturday, February 25, 2012

Is CDH Genetic? - Guest Speaker Meaghan Russell, MPH, PhD

Meet our guest speaker...

Meaghan Russell, MPH, PhD
Pediatric Surgical Research Laboratories
MassGeneral Hospital for Children

Click here to go to the CDH Q&A on Genetics!


Because there is a massive amount of misinformation and inaccurate medical advice being posted lately on Facebook on different pages and groups and many parents seem confused about CDH and genetics and the possible causes of Congenital Diaphragmatic Hernia we have asked geneticist and CDH expert, Meaghan Russell, to guestspeak here on our Facebook page to answer any questions that you may have about possible causes, current research, familial CDH, etc.

Please post your questions as comments to this note and she will answer as her schedule allows. 

*** Please note that Meaghan cannot give medical advice or diagnosis your cherub via the internet! ***

Meaghan Russell and Mauro Longoni at the 2011 CDH Conference


View videos from Meaghan's lectures at the CDH conference at or



"Congenital diaphragmatic hernia candidate genes
derived from embryonic transcriptomes"

Congenital diaphragmatic hernia (CDH) is a common (1 in 3,000 live
births) major congenital malformation that results in significant
morbidity and mortality. The discovery of CDH loci using standard
genetic approaches has been hindered by its genetic heterogeneity.
We hypothesized that gene expression profiling of developing
embryonic diaphragms would help identify genes likely to be
associated with diaphragm defects. We generated a time series of
whole-transcriptome expression profiles from laser captured em-
bryonic mouse diaphragms at embryonic day (E)11.5 and E12.5
when experimental perturbations lead to CDH phenotypes, and
E16.5 when the diaphragm is fully formed. Gene sets defining
biologically relevant pathways and temporal expression trends
were identified by using a series of bioinformatic algorithms. These
developmental sets were then compared with a manually curated
list of genes previously shown to cause diaphragm defects in
humans and in mouse models. Our integrative filtering strategy
identified 27 candidates for CDH. We examined the diaphragms of
knockout mice for one of the candidate genes, pre–B-cell leukemia
transcription factor 1 (Pbx1), and identified a range of previously
undetected diaphragmatic defects. Our study demonstrates the
utility of genetic characterization of normal development as an in-
tegral part of a disease gene identification and prioritization strat-
egy for CDH, an approach that can be extended to other diseases
and developmental anomalies.

Click here to go to the CDH Q&A on Genetics!

Wednesday, February 1, 2012

CHERUBS E-Newsletter Is Out!

To see the full, clearer view of the E-Newsletter, click here.
Subscribe -


CDH Awareness & Research Facebook Cover Masthead

CHERUBS in the Contest - Contest Ends On February 5th! ContestBetween now and February 5th, CHERUBS is in the Coastal contest at, competing against 9 other charities for $5000 for CDH Research!  Can you help?

The charity who raises the most donations wins $5000. Charities keep all their donations and the first $5000 in donations was matched by Coastal - CHERUBS raised $1800 in matches!

Every donation will bring us closer to winning the additional $5000 for CDH Research!

$50,000,000 CDH Research Bill
We are still working hard on getting members to write to your Congressmen in support of the $50,000,000 Congenital Diaphragmatic Hernia Research Bill!   Have you sent your letters in yet?  We have sample letters you use at   Most will write you back but no, you won't get a pretty proclamation with a gold seal... what we will get is photos of these children on their first birthdays because with research more babies will survive CDH!

Also, don't forget to sign the petition and if  you're on Facebook, you can use the new CDH Awareness & Research Cover (above, at top) on your timeline!

2012 Parade of Cherubs In Washington DC

We have tentatively planned to hold a Parade of Cherubs in Washington DC on Thursday, April 19th in Observance of the Day of Congenital Diaphragmatic Hernia Awareness Daily Celebration.  We work extra hard on this day each year to raise CDH Awareness and promote the need for DAILY awareness because April 19th is the anniversary of the removal of the trademark on "Congenital Diaphragmatic Hernia Awareness".  Around the world families hold events, fundraisers, light candles, release balloons and more.

This year on April 19th we are going to promote not only CDH Awareness but CDH Research by marching through the Mall between the Washington Monument and Lincoln Memorial and up to the steps of the Capitol Building with the children (cherubs, survivors, friends, etc) wearing wings. At Capitol Hill we will visit Congressmen to tell them about CDH and the importance of this research aJim Beau Reinhardt, photo by Samantha Aldaynd hopefully we have a chance to chat with our bill sponsor, Senator Jeff Sessions whose grandson, cherub Jim Beau, is in the photo to the left and part of our Save the Cherubs campaign!   So far 30 families have responded who want to attend and we are VERY excited about this event!  If you have never been to Washington DC, this is a great reason to go!   Visit the FB event page for details at

2012 CDH Conference - Save the Date!
The 2012 International Congenital Diaphragmatic Hernia Conference will take place on July 26 - 29th in San Francisco, California!   Our conferences include the best CDH Researchers in the world, parent round-table discussions, a Parade of Cherubs with balloon release, Pizzy Party, CDH Awareness news, fun for the kids and more!   We never charge a conference fee, try to make it as safe and affordable as possible and we always learn so much from the researchers and each other!  ALL members are welcome to attend!   Stay tuned for hotel information as well as the conference schedule at

Want To Be In A CDH PSA Video?
CHERUBS has been granted a 3 minute CDH PSA through a local Raleigh videography firm.  This video will be used on our sites, social media and submitted to television and radio stations around the country.  We are also in the initial planning phases of creating a 30 minute educational video for our CDH HOPE Totebags.

If you would like to participate in these videos, please e-mail Dawn at  You can also view all our past videos at our YouTube channel.

Save The Cherubs Posters
Save the CherubsWe are working on grant funding to mass produce our "Save the Cherubs" CDH Awareness posters for display across the country but in the meantime you can order posters through our store or download the graphics for free and print them yourself to post around town, at your office, at home or at other locations to raise awareness!

We also need more photos!   We especially need seasonal and holiday themed photos for our calendars and events.  You can find out more info on the types of photos, how to make it "candid" and where to order wings at

CDH HOPE Totebags - We Need Your Help!
CDH HOPE TotebagsMany thanks to the wonderful families who are donating items to help us fill the CDH HOPE (Helping Other Parents Expecting) Totebags!  Right now we are sending out 30 to 40 totebags per month to new and expectant CDH families at about $40 each for shipping, CDH Baby Books and totebags and other items not donated, so these donations are helping us quite a bit as we expect to spend over $16,000 to fund this service in 2012. 

We are always in need of items for the totebags;  baby hats and booties, baby shirts, blankets, children's books, disposible cameras, handprint kits, soft picture frames, hand sanitizer, hand lotion, chapsticks, baby eye masks, pacifiers and journals.  All donations are labeled in honor / memory of the donor's cherub.  If you would like to donate items, please mail them to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.

Grant Funding & Corporate Donations
Jacob RondeauCHERUBS is working hard to raise money this year to help with many projects, awareness and research.  Ideally, we'd like to raise over $500,000 in 2012 but we need your help!  Do you know of a Foundation who may grant funding to our charity or does your place of work donate to charities?  If you can help, please contact Ashley at

2012 CDH Awareness Calendar
The 2012 CDH Awareness Calendar and 2012 Save the Cherubs calendar are still on sale!!!

Our CDH Awareness Calendar for 2012 features over 1050 cherubs!  If  you have ever sent your child's photo to CHERUBS in the past 16 years, your cherub is included!  These calendars make wonderful gifts for family, friends and medical staff.



Donate to CHERUBS
to help children like Andrew fight CDH.   Donations are tax-deductible and greatly needed.


Calendar of Events:

Now - February 5th - Contest

Now - February 14th - CDH Valetines Fundraiser

Now - February 14th - CDH Valetines Jewelry Sale

March 17th - Eli's Family Fun Run in Wilmington, NC

March 24th - Great Human Race in Durham, NC

April 19th - Parade of Cherubs, Washington DC

June 30th - Mount Snowden Climb in Wales, UK

July 26-29th - 2012 CDH Conference in San Francisco, CA

October 22nd - 2012 Masquerading Angels Ball in Raleigh, NC


  By E-Mail
  On Facebook
  On Twitter
  On YouTube
  On Google+
  On Blogger
  On LinkedIn

Mailing Address:
3650 Rogers Rd #290
Wake Forest, NC 27587

Office Address:
1725 S. Main St
Suite 202
Wake Forest, NC 27587

Phone:  919-610-0129
Toll-Free:  855-CDH-BABY / 855-234-2229
Fax:  815-425-9155

Valentine's Day Jewelry Fundraiser:

We have several items to offer this year from great people helping us to help babies born with Congenital Diaphragmatic Hernia.   Get your order in for Valentine's Day!!!
The Cherub: CDH charm
 Congenital Diaphragmatic Hernia Awareness Bracelets
NEW- CDH Awareness Bracelets
Now offering Yellow Bracelets and sets of 3!
Silicone CDH Awareness Bracelets directly from CHERUBS
Earring Heart Charm
And for the men...

Cherub Alexandria, finally home after 5 months in the hospital!

Feel free to use our FB profile photo!