Press Release: Congenital Diaphragmatic Hernia Charity Recruits Voters to Win $375,000 to Help Critically Ill Babies And Their Families
Local Nonprofit Organization In National Pepsi Refresh Contest In The Running For $375,000 To Help Raise Awareness and Research Funds for Devastating Birth Defect
Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) has climbed an uphill battle for 15 years to raise awareness and research fund and to continue to finance support services. Now, they battle alongside other charities to fight for funding in the Pepsi Refresh contest.
On the first of each month, for 6 months, up to a dozen volunteers stayed awake until midnight when Pepsi Refresh opened the application process for new projects. Feverishly clicking their computer keys to be one of the 1000 application accepted in the 2 minutes the system was open each month before the application limit was reached. Finally, in July two applications made it through and they were in the August contest; $25,000 to provide financial assistance for families hospital travel expenses and $25,000 to provide easy-to-understand information for hospitals. For CHERUBS, the contest now began.
Coming off the all-summer long APX Gives Back contest, in which they they won 2nd place nationally for a prize of $30,000, CHERUBS members and voters were tired but diligently went back to work to try to win a Pepsi grant. "Never did we expect to be in 2 huge contest back-to-back, nor have this incredible opportunity to try to win funds of this size. But here we are and we are so excited for the chance to be able to fund so many greatly needed projects” said CHERUBS President, Dawn Williamson.
The contest grew even bigger for CHERUBS when 3 more projects made it into the September contest; $250,000 for research funds, $50,000 for an awareness campaign and $25,000 for care packages for families. With their previous 2 projects making the top 100 and rolling over to another month's voting, CHERUBS now has 5 projects in Pepsi Refresh.contest, an unheardof accomplishment. "5 projects are a lot, but we didn't plan this and this is 5 opportunities, not 5 sure wins. We have a lot of work to do to win even 1 of these project grants" says Williamson. "These projects are laid out, every cent won has plans attached to it to help babies and families affected by Congenital Diaphragmatic Hernia. All 5 of these projects could help 1000's. 30,000 babies are born with CDH every year and 15,000 of those babies don't survive. There are 100's of thousands of CDH families who need help. This is the largest grant possibility for these families that has been ever available. We are excited about this opportunity to do so much good!"
CHERUBS members are excited too. The charity's web site shows photos of children holding up signs and asking for votes, while wearing wings and holding cans of Pepsi. Facebook is littered with adorable profile photographs of more children asking for votes. There are videos, bumper stickers, flyers, banners, signs in yards, school projects and 1000's of posts on-line to raise awareness and votes. "The excitement is contagious. Our members are so happy to be able to do something to help other CDH families. CDH makes you feel so helpless, we don't often get opportunties like this to really make a difference by doing something as simple as voting. And to be able to use our own children's photos and stories to raise awareness on such a huge level is thrilling for so many of us!" says Williamson.
CHERUBS not only raising awareness and voting for cash for their cause but an added bonus is networking with other causes. “We are so excited to be in this contest and to be in the company of so many other wonderful charities and projects! We have learned so much about other causes and became friends with many. No matter who wins this contest each month, we will all come out as winners. This has been a wonderful platform to raise awareness for all of our causes”.
Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3400 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 in the pediatric intensive care unit of Duke University and had many other hospitalizations and surgeries at the University of North Carolina at Chapel Hill.
“I miss my son every single day; CDH took him from me and robbed him of any type of normalcy during his short life,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold.”
Williamson made it her life’s mission to help other families affected by Congenital Diaphragmatic Hernia. If there is any doubt of faithfulness to this mission you need only to read the glowing reviews families around the world have posted all over the internet about how CHERUBS has helped them through their darkest days, see all the services listed on their web sites or count the over 12,000 fans they have on Facebook.
Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It 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 Williamson’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.
In the U.S., there are annually more victims from CDH than tornados, hurricanes and lightening strikes combined. 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. According to a Congressional Bill the charity is hoping to get passed for CDH Research, the estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000 while annual grants allocated by the National Institutes of Health for CDH at several research facilities is currently estimated at less than $5,000,000. Through this contest and other efforts, CHERUBS hopes to raise more awareness and funds for research and family support. “These babies are dying by the thousands and there is no known cause. The survival rate is only 50%. This just cannot be acceptable” says Williamson.
“This contest has not only allowed us to dramatically raise awareness about Congenital Diaphragmatic Hernia but it has offered us the opportunity to raise more money for our charity than we ever have before. $375,000 can do so many things for the CDH community and we are so grateful to Pepsi Refresh and to everyone who is voting for us.” For a small charity powered by volunteers, donations and fundraisers and run in a spare room of Williamson’s home to save funds, $375,000 could indeed go a long way. “We have over 3300 members and all of our services are free to CDH families. We run a very large web site with forums for families to gain information and support 24 hours a day, an annual international Congenital Diaphragmatic Hernia conference, the world’s largest CDH research database, we send care packages to new and expectant parents and so many, many other services on less than $35,000 a year. Our budget averages about $10 of assistance per family, which is ridiculous but we somehow pull it off. Winning this contest could do so much for our ability to help more CDH families!” says Williamson.
Families affected by CDH agree. “I vote because my sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. CHERUBS has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and information I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and CHERUBS has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart” says mom Sara Jimel Givent.
“I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 days. We love him and miss him terribly. If CHERUBS can win the $100,000, maybe another family won't have to go through this” wrote dad Jeff Campbell.
“Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "CHERUBS". His outlook was not good but he is strong and healthy today because of UNC Children’s Hospital and Brandon’s drive to survive. Thanks CHERUBS for all the hard work and dedication that you provide for families struggling with this horrible birth defect. You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home” writes Fayetteville resident Cheryl Sandoval.
The fight to help these families is also obviously apparent in the members of CHERUBS. “When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who listen to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect” says Canadian mom Shana Kelly.
CHERUBS welcomes the community’s support and votes in this contest. If you would like to help this organization you can vote through their web site at http://www.voteforcdh.org or through Facebook or text.
Proceeds from the contest will benefit CHERUBS Research, Awareness and Support Funds, and Williamson is hoping that the contest will bring out many supporters and media to help gain recognition for both CDH and the organization’s efforts.
CHERUBS will also gladly accept any donations to help further their work. Tax-deductible donations can be made on-line at http://www.cdhdonations.org or mailed to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.
To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting a key fundraising event this fall. The CHERUBS 2010 Masquerading Angels Ball will be a formal event held on October 30th at the Durham Hilton near Duke with celebrity guests, a live band, casino and an auction. More information on this event is available at http://www.cherubsangelball.org
“There is still so much research that needs to be done. In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research,” said Williamson. “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 and we will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found.”
CHERUBS is a 501(c)3 organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of June 2010, CHERUBS has over 3400 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.