PRESS RELEASE: Local Nonprofit Organization Wins $30,000 In National APX Gives Back Contest To Help Raise Awareness and Research Funds for Devastating Birth Defect

Local Nonprofit Organization Wins $30,000 In National APX Gives Back Contest To Help Raise Awareness and Research Funds for Devastating Birth Defect

08-23-2010

Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) learned about a contest on Facebook through a member expecting a baby with CDH.

Alarm company, APX, based out of Provo, Utah is known to be very generous to the non-profit community. This contest was yet another way that this company gives back. 5 lucky charities won $30,000 and another charity walked away with a grand prize of $100,000.

CHERUBS was one of the lucky charities who won $30,000 but they were also the 2nd in the nation, losing out of the first place prize by less than 3000 votes.  They raised over 35,000 votes through Facebook during the summer and came in a very close second-place.

"It was a very close race all along and we tried our best but we just didn't have the resources and manpower to pull it off this year.   But we gave them a run for their money and we won $30,000 for our cause so we definitely came of this contest as very big winners!" says CHERUBS President and Founder, Dawn Williamson of Wake Forest, NC.

The race wasn't without it's fair share of drama and suspense.   "There were some technical issues with the application software that didn't allow our charity to post links like others charities but that just made us work harder!  We bounced back between 1st and 2nd place throughout the contest so it was very nerve-wracking to say the least.  We had celebrities posting and tweeting for votes for us.  Doctors and researchers in their labs voting for us.  Kids made "vote for CHERUBS" signs and their parents took photos that we used throughout the contest.   Even soap star Patsy Pease took a photo with her son, who was born with CDH, to raise more votes.  We did raffles, passed out flyers, voter recruiting contests and we even had members dye their hair pink and blue to get more votes.   I myself even promised the charity members that I would get a tattoo if we won 1st place so on the bright side, I'll be avoiding that now!" says Williamson, laughing but she has since decided to get that tattoo if CHERUBS wins in the Pepsi Refresh grant contest that they are also currently competing in.

The APX Gives Back contest was made possible through a software application on the popular social media site, Facebook. It began on May 3rd with Facebook users nominating their favorite charities in 5 regions. On June 14th, the top 15 charities from each region made it to Phase II, where the votes were reset and the real competition began. The charity with the most overall votes on August 21st to be awarded $100,000, while the other charities in the remaining regions with the most votes will receive $30,000 donations.  CHERUBS won first place in the Eastern Division.

“We are so excited that we had the opportunity to be in this contest and to be in the company of so many other wonderful charities! We have learned so much about other causes and became friends with many, including members from the Prader-Willi Syndrome Foundation (the 1st place winning charity).   We also made wonderful friends and collaborations with other charities Now I Can, Military Moms and Wives of Brazoria County, Handprints of Hope and Quest.  No matter who won in this contest, we all came out as winners. This has been a wonderful platform to raise awareness for all of our causes” said Williamson.

The charity will be presented with an award check on September 14th, when the president of APX will fly out from Utah to present the $30,000 to Mrs. Williamson and other charity board and members at a press conference here in the Triangle.

Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3300 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. I lost the chance to watch him grow up and grow into a young man; learn to ride a bike or drive a car; go to college or get married or have children of his own,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold. Shane was an amazing little boy that was always happy despite the fact that he spent so much of his life in the hospital. CDH devastated our family.”

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 11,000 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 hundreds 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. This $30,000 prize doubled our annual budget and we are so grateful to APX and to everyone who voted 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, $30,000 will 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 will do so much for our ability to help more CDH families!” says Williamson.

Proceeds from the contest will benefit CHERUBS Research 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.  "We raised so much Congenital Diaphragmatic Hernia awareness in this contest!  We introduced CDH to tens of thousands of people and that is more awareness than CDH has ever had in history.  We are so proud of that!" says the beaming Mrs. Williamson

The fight for funds for CHERUBS isn't over yet, they have also have 2 projects currently in the Pepsi Refresh contest;   $25,000 for financial help to families facing hospitalizations with their children to cover travel costs and $25,000 for CDH materials for hospitals.   "Both of these projects desperately need funding and would make a world of difference for families affected by CDH".

CHERUBS welcomes the community’s support and votes. If you would like to help this organization you can vote and learn more about Congenital Diaphragmatic Hernia at http://www.voteforcdh.org

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.”


About CHERUBS

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 3300 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.

http://www.voteforcdh.org
http://www.cdhsupport.org
http://www.cherubsangelball.org