Thursday, April 8, 2010

New CDH Awareness Song and Video! "I'll Never Let You Go" by The Jammies

 This video includes many NC cherubs!

New CDH Awareness Song and Video!

"I'll Never Let You Go" by The Jammies

Available on iTunes soon. Proceeds donated to CHERUBS to help raise CDH Awareness

Featuring 736 children and adults born with Congenital Diaphragmatic Hernia, affectionately known as "cherubs". Members of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

Save the Cherubs CDH Awareness Campaign -

Congenital Diaphragmatic Hernia

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

2010 Triangle March for Babies

Join CHERUBS as we represent the CDH community and help to raise awareness of birth defects in the Triangle March for Babies benefitting the March of Dimes.

Save the Cherubs Congenital Diaphragmatic Hernia Awareness Campaign

We have 6 North Carolina cherubs participating in this campaign!

Save the Cherubs
Congenital Diaphragmatic Hernia Awareness Campaign

Photo Taken By Mandy Sroka Photography -
Cherubs are everywhere.  They are your next door neighbor's new baby.   The little girl on the swingset at the park.   The teenager that sits behind your son in high school geometry class.   The person behind you in the grocery store line.    Their scars are hidden under clothes, their stories a bit sad and taboo to talk about - so the miracles are not seen with the naked eye and you have probably mistaken a cherub for a "normal" person many times.   But they are there; walkling miracles with invisible wings.   And missing babies that belong to the grieving parents who you don't see grieve;  your local bank teller, the man who held a door for you at the gas station, the old woman who drove the car in front of you at the stop light this morning.   Cherubs are everywhere.

Unless you have been affected personally by CDH, you probably have never heard of it.   The mission of "Save the Cherubs" is to make Congenital Diaphragmatic Hernia a phrase everyone knows how to say and everyone knows what it means.  By raising awareness, we hope to raise research funds to save these babies - Save the Cherubs.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   Babies born with CDH often endure long hospitalizations and other complications such as pulmonary hypertension, infections, feeding issues, asthma and temporary developmental delay.    Some babies develop worse complications and sadly, 50% of babies born with CDH do not survive.    The cause of CDH is not known.

Cherubs are people who were born with Congenital Diaphragmatic Hernia, a severe and often fatal birth defect that occurs as often as Cystic Fibrosis and Spina Bifida.  Every 10 minutes a baby is born with CDH - adding up to over half a million babies since 2000.   Yet, CDH is given very little media attention, virtually no research money and until CHERUBS came along in 1995 there was no information and no support for families of babies diagnosed with CDH.   We have no national telethons, no large corporate sponsorships.   We have been struggling for years to bring attention to CDH and now, we are going to do so on a national level.

For 15 years, cherubs have been the awareness symbol of Congenital Diaphragmatic Hernia (CDH).   Through this project, families around the world are working with CHERUBS, photographers and the media to raise CDH awareness in a unique and striking photo and marketing campaign, which we hope will take your breath away and make you want to learn more about CDH and how you can help save these children.

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support  was founded in 1995 to give hope and information to families of children affected by Congenital Diaphragmatic Hernia (CDH).    We are a 501(c)III non-profit global CDH organization with members in 38 countries.    Run solely by volunteers and donations, CHERUBS strives to allow families to have free access to information materials, support services, awareness projects and to make a CDH connection with other families going through the same ordeal.  We are just a grassroots organization of families working hard to make a difference and trying to give Congenital Diaphragmatic Hernia Awareness wings to take flight.

CHERUBS is fighting hard to search for the cause, prevention and best treatments of CDH.   We invite you to help us to help these families and to help Save The Cherubs.

Congenital Diaphragmatic Hernia Awareness Ribbon

Media & Press Information for the "Save the Cherubs" Campaign

March 18, 2010 Press Release:

Dawn Williamson *

New 'Save The Cherubs' Campaign Brings Awareness To Little Known Deadly Birth Defect That Has Affected Over Half A Million Babies In The Past Decade

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 a national CDH Awareness Campaign.

Raleigh, NC - CHERUBS, a grassroots non-profit organization created and run by parents of children born with a severe birth defect, is leading the way in raising Congenital Diaphragmatic Hernia Awareness through a new campaign called "Save the Cherubs"

Founded in 1995 by Dawn Williamson, CHERUBS is the world’s first and largest Congenital Diaphragmatic Hernia (CDH) organization with over 3000 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. Shane spent his first 10 months at Duke University Medical Center in Durham, North Carolina and endured many more hospitals both at Duke and at the University of North Carolina at Chapel Hill.  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.

“I wanted to create an organization to help those parents of children with CDH,” said Williamson. “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.”

CHERUBS serves the CDH community without charging parents or medical care providers for it’s services.  The amount of information and services that this group provides is staggering given that 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 for awareness and for research funds.

CDH affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year and over 600,000 babies since the year 2000 - half of which do not survive. Some of the surviving babies, 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, pulmonary hypertension or other long-term pulmonary problems.

There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, 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.  
“Once a child come homes, it is not uncommon for a parent of a child with CDH to have to explain the birth defect to their pediatrician or general practitioner.  When the medical community is not that aware of something as common as CDH, it makes it almost impossible to raise public awareness but we are determined to change that."

CHERUBS is indeed determined.   In addition to all of their other services and projects, they have taken on a national campaign to catch the attention of the public.   In their new "Save the Cherubs" campaign, the charity is working with photographers and families around the country to capture these children and the affects of CDH on camera.

"The mission of 'Save the Cherubs' is to make Congenital Diaphragmatic Hernia a phrase everyone knows how to say and everyone knows the meaning of.  Our campaign is a media blitz using photos of the kids dressed as cherubs (street clothes with wings) in photos doing real life things to emphasize that these kids are real… they exist, they could be on the playground playing with your kids. They could be the children of the people you shop beside or the baby your neighbor lost but no one knows because there is no awareness!"

The charity seems to have no shortage of photographers and models and hope that the media and marketing worlds will join in as well.   "We are raising money to try to pay for billboard advertisements, magazine ads and newspaper ads.  Our members are all joining it to contact marketing companies to see if they will donate space to help raise awareness.   Local newspapers, television stations and magazines through the country are also joining in and covering our campaign photo shoots.  This truly is a group effort of CDH families, photographers, the media, marketing companies and CHERUBS and we really believe that through this campaign we will have the opportunity to inform millions of people about CDH.   It is a momentous event because this is the biggest CDH Awareness project ever created."

"By raising awareness, we hope to raise research funds to save these babies - Save the Cherubs." 
said Williamson.  “There is still so much research that needs to be done and so many babies that need to be saved.”

"In 2010 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.  
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.  To have more research funds, we need more awareness."

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 CDH Baby Book are working on two Congressional Bills and are in the midst of planning many events, including our CHERUBS Angel Ball in Durham in August and our 2010 International CDH Conference in San Francisco in July.   We are always so busy at CHERUBS and try so hard to bring more attention to this birth defect and more services to families”.

If you would like to join in on this campaign or make a donation to help further their efforts, you can reach CHERUBS through the campaign web site at



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). CHERUBS has over 3000 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.

Representing CHERUBS and CDH Awareness at the 2010 Durham, NC "Great Human Race"


On Saturday, March 27th, CHERUBS members participated in the Triangle's Great Human Race.  It is an annual 5k walk / run for local Raleigh - Durham non-profit organizations.   

We had about 20 people represent CHERUBS and raise CDH awareness in honor or in memory of their cherubs! We even had an expectant mom who is 6 months pregnant join in!   Families representing CHERUBS included Gene and Becky Hobbs in memory of Andrew Hobbs, Craig and Dawn Williamson in memory of Shane Torrence, and Kendrah Kidd and Chris Ward in honor of their cherub who is due this summer.  

We had fun and we raised money for a good cause.  The final numbers aren't in yet but we raised over $1200 in our first year in the event!!!!  Not bad for walkers who literally finished LAST in the walk!  :)

It was so wonderful to meet new families and spend time with old friends.  Just walking and talking and knowing you're not going down the path alone can make such a huge difference to a CDH family! 

It was a very successful event.  One that we hope to participate in every year.   A huge thank you to the family and friends of Andrew Hobbs for all their hard work and for bringing CHERUBS into this wonderful event!


On the way back from the race, Dawn got a chance to meet another CDH mom, Julie Younce, mom of CDH survivor Aaron!

UNC's Dr. Sean McLean receives Robert Wood Johnson Foundation award

Sean E. McLean, MD, has been selected as a 2010-2014 Harold Amos Medical Faculty Development Program scholar. The Harold Amos Medical Faculty Development Program is a national program of the Robert Wood Johnson Foundation.

McLean, an assistant professor of pediatric surgery in the University of North Carolina at Chapel Hill School of Medicine, is one of only 11 nationwide selected this year to receive the award. Harold Amos scholars are selected based on their academic achievement, their commitment to academic research careers, and their potential to achieve senior rank in academic medicine.

The Harold Amos Medical Faculty Development Program seeks to increase the number of faculty from historically disadvantaged backgrounds who can achieve senior rank in academic medicine and who will encourage and foster the development of succeeding classes of such physicians.

McLean said he plans to use the $420,000, four-year grant to support a laboratory research project that focuses on how changes in smooth muscle cell phenotypes contribute to pulmonary hypertension, using a mouse model for congenital diaphragmatic hernia. This condition affects approximately 1 out of every 2,500 to 4,000 babies born in the U.S., making it more common than two more widely known congenital disorders, sickle-cell anemia and cystic fibrosis, McLean said.

McLean's UNC mentor for the project is Cam Patterson, MD, MBA, chief of cardiology and director of the UNC McAllister Heart Institute. Administratively the project is jointly housed by the Department of Surgery and McAllister.

A 1998 honors graduate of the UNC School of Medicine, McLean completed a residency in general surgery and a research fellowship at Washington University in St. Louis and a residency in pediatric surgery at the University of Michigan before joining the UNC faculty in 2008.

Provided by University of North Carolina School of Medicine

New Blog

We have a created a new blog - our other one over on Wordpress was taken down thanks to a complaint by another CDH "charity" who claimed ownership of the phrase of "Congenital Diaphragmatic Hernia Awareness". At the time, they did own a trademark on the phrase but we were contesting it. Rather than deal with drama, Wordpress just honored their complaint and deleted our NC blog. And many other state blogs were targeted too and removed. Not nice! :(

But it's ok because we're at home here over on Blogger where it's free to edit your template and they believe in Free Speech, research complaints and doing what's right. They have been home to our main blog for over 2 years and we love Blogger! THANK YOU Blogger for not listening to petty jealousy and drama and letting our charity post without worry! :)

CHERUBS Members in North Carolina

CHERUBS Members in North Carolina as of January 1, 2010




Expectant families were not included.