Local Woman Starts Nonprofit Organization to Help Raise Awareness and Research Funds for Devastating Birth Defect
Released on: July 14, 2008, 1:56 pm
Press Release Author: Rachel Wells
Industry: Non Profit
Press Release Summary: After her own son's birth, Dawn Torrence started CHERUBS, the first and only support group and resource center for families struggling with Congenital Diaphragmatic Hernia
Press Release Body: Durham, NC - July 14, 2008 - CHERUBS, a non-profit organization founded to not only help parents of children born with CDH, but to lead the medical community in finding the cause and prevention of this devastating birth defect, is working to raise funds to help further the organization in its philanthropic endeavors. Encouraging participation from the local community, CHERUBS is hosting two events for the public including, the 2008 Angle Ball and the 1st Annual CHERUBS Golf Tournament. Founded in 1995 by Dawn Torrence, CHERUBS is the world's largest CDH organization with over 2400 members in 37 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. "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 Torrence. "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 even though he spent most of his life in the hospital. CDH robbed me of being a mom, and Shane was and probably will be my only child." Immediately after Shane's death, Dawn searched for a support group, people she could turn to for answers, 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. We work toward saving babies in the future and honoring those we have already lost." said Torrence. "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." CDH 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 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, or long-term pulmonary problems. There are more children born each year with CDH than there are children born with Cystic Fibrosis, 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. "I had signs in my pregnancy that there was something wrong with the baby, but the doctors were not able to recognize any problems despite my son's extensive birth defects," claims Torrence. "If the doctors had been more educated about this birth defect, they could have been more prepared to provide him with the right care." To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting two key fundraising events this summer. The CHERUBS Inaugural 2008 Angel Ball will be a formal event held on July 26 at the Sarah P. Duke Gardens in Durham with food provided by several different catering companies, a live band and an auction. Everyone is encouraged to wear white and women are welcome to wear their wedding dresses again to go along with the angel theme. The other event is the CHERUBS Inaugural 2008 Charity Golf Tournament held on July 28 at Brier Creek Country Club. Special Guest, Eric Lastowka, will be giving demonstrations and there will be a sports memorabilia auction. Proceeds from both events will benefit CHERUBS, and Torrence is hoping that the event will bring out many supporters and media to help gain recognition for both CDH and the organization's efforts. "There is still so much research that needs to be done. In 2008 this birth defect should not still exist, much less still have so many unanswered questions and so little research," said Torrence. "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 2008, CHERUBS has over 2400 members in all 50 states and 33 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.