Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Showing posts with label nc. Show all posts
Showing posts with label nc. Show all posts
Wednesday, April 18, 2012
Governor of North Carolina Proclaims April 19, 2012 a Day of Congenital Diaphragmatic Hernia Awareness
The governor of North Carolina has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!!
Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade
Tuesday, March 27, 2012
Eli's Fun Run
Many thanks to all the wonderful people who turned out on March 17th in Wilmington, NC to run or walk in memory of Eli Willis and raise funds for CHERUBS to help other babies affected by CDH!
Saturday, March 10, 2012
Eli's Run - Wilmington, NC on March 17th
http://www.setupevents.com/index.cfm?fuseaction=event_detail&eventID=2135
The 1st annual Eli Willis Memorial Family Fun Run is to honor the memory of Eli Willis. Eli was born Oct 9, 2011 with a congenital diaphragmatic hernia (CDH). This life threatening condition affects 1 in 2500 births, yet little is known about its cause and worse how to treat it. The survival rate for children diagnosed with CDH is only 50%.
To honor Eli's memory, this event will help raise funds to support CDH research and bring awareness to this birth defect.
Marathoners can allow their younger supporters to enjoy their own event and then attend the Race Expo at the same location. The run will be 1 mile, taking place in Mayfaire Towne Center. Runners can enjoy a 1 mile run with their family and then relax with breakfast, coffee, or shopping in Mayfaire.
http://www.crowdrise.com/racingforeli
The 1st annual Eli Willis Memorial Family Fun Run is to honor the memory of Eli Willis. Eli was born Oct 9, 2011 with a congenital diaphragmatic hernia (CDH). This life threatening condition affects 1 in 2500 births, yet little is known about its cause and worse how to treat it. The survival rate for children diagnosed with CDH is only 50%.
To honor Eli's memory, this event will help raise funds to support CDH research and bring awareness to this birth defect.
Marathoners can allow their younger supporters to enjoy their own event and then attend the Race Expo at the same location. The run will be 1 mile, taking place in Mayfaire Towne Center. Runners can enjoy a 1 mile run with their family and then relax with breakfast, coffee, or shopping in Mayfaire.
http://www.crowdrise.com/racingforeli
Tuesday, March 6, 2012
Wake Living Magazine - "One baby’s congenital defect leads to a nationwide support group"
http://www.wakeliving.com/Guardian_angels.aspx
ealth Watch > Guardian angels
It was late January in 1993, and just like any new mom-to-be, Dawn Williamson was excited and anxious to meet the baby growing inside of her. But during her pregnancy, Williamson had these haunting nightmares that there was something wrong with her baby.
After almost 10 hours of labor, a baby boy named Shane arrived. But Williamson’s joy immediately shifted to dread as she saw her nightmare become her reality: Upon cutting the umbilical cord, her baby turned blue. Shane was born with a left-sided congenital diaphragmatic hernia (CDH) and multiple other birth defects.
CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year — and between 35 and 40 annually in North Carolina. To put it into perspective, it occurs about as often as cystic fibrosis and spina bifida.
Sadly, half of all CDH-diagnosed babies do not survive. Some survivors 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.
On a mission
What Williamson expected to be a short hospital stay in the maternity ward turned into relocating to North Carolina from South Boston, Va., to spend 10 months sitting by Shane’s bedside at Duke University Medical Center in Durham. Having never heard of CDH, she immediately searched for a support group online but couldn’t find one that could answer her questions or calm her fears about her son’s diagnosis. After spending hundreds of hours in the hospital’s medical library researching CDH and only finding support from parents she met during Shane’s hospital stay, Williamson believed her mission was to create a CDH support group herself.
In 1995, she formed the charity CHERUBS — her special name for babies with CDH — in Wake Forest. The grassroots nonprofit organization is run by parents of children born with a severe birth defect. Today, it is the world’s first and largest CDH organization, with more than 3,000 members in 38 countries and all 50 states.
“I wanted to create an organization to help parents of children with CDH because I know exactly how it feels to have your dreams of delivering a healthy baby suddenly turn into your worst nightmare,” Williamson says. “I understand the emotional roller coaster that these families experience, so to be able to give them a place to turn for support is very rewarding.”
A common thread
Sadly, Shane passed away in 1999 when he was just six years old. He spent his last weeks in the hospital with a recurrent CDH and a very rare complication called a gastropleural fistula, or an opening between his stomach and his lung that caused pneumonia.
But there are CDH stories with happier outcomes. Survivor Lizz Lopez was born in 1972 in Burlington. Like Williamson, Lopez’s mom had a terrible feeling that something was wrong with her while she was pregnant. She even told her husband that they needed to start saving money for medical bills. Lopez was born blue and not breathing and was immediately rushed to Memorial Hospital at UNC, where X-rays revealed that something was not right. Surgeons weren’t quite sure how bad the situation was until they opened her up. She had her first CDH surgery at four hours old and has been fine ever since.
Modern technology certainly has made in-utero diagnosis more common. However, according to Dr. J. Duncan Phillips, surgeon-in-chief at WakeMed Children’s Hospital in Raleigh, a 2009 CDH study group registry of 65 medical centers throughout the world revealed that roughly 50 percent of parents are unaware that their baby has CDH until after he or she is born.
“If the defect is picked up by ultrasound, then the pregnant mom is usually referred to a perinatologist for high-risk pregnancy and a level 3 ultrasound is conducted,” Phillips says.
In Williamson’s case the traditional ultrasound did not pick up the defect, and Lopez was born in the early 1970s during a time when ultrasounds in physicians’ offices were uncommon.
Living with CDH
Williamson can remember vividly the day her life changed. With that one breath, a huge amount of fear and anxiety flooded in. She remembers Shane being whisked away, and the frustration of not knowing if her baby would survive.
Things change by the minute or the hour with CDH babies. Phillips recommends that parents stay calm and wait for frequent updates from their medical teams. Some babies do well, but ones that are struggling are referred to hospitals that are more equipped to handle the severity of their defects.
“Some patients may even be candidates for treatment in utero prior to delivery,” Phillips says. “There are big fetal centers across the country, including in San Francisco, Philadelphia and Cincinnati.”
To date, there is no known cause for CDH. The Internet provides parents and other concerned family members with an opportunity to do what health care providers and government agencies should be doing but often don’t: come up with support groups for other parents and family members.
Fortunately for parents-to-be or new parents who have been given a CDH diagnosis for their child, they have a place to turn. CHERUBS offers a place to get answers to their questions, talk with other parents of CDH children and learn more about some of the long-term effects from survivors.
“We are really very grateful to parents like Dawn for taking this job upon themselves,” Phillips says.
Kelly Maicon is a freelance writer based in Raleigh.
ealth Watch > Guardian angels
| |
| After her son, Shane, was diagnosed with a congenital diaphragmatic hernia, Dawn Williamson formed the charity CHERUBS as a way to offer education and support. photo: Lynn Cañez, 3rd Floor Studio |
Guardian angels
One baby’s congenital defect leads to a nationwide support group
by Kelly MaiconIt was late January in 1993, and just like any new mom-to-be, Dawn Williamson was excited and anxious to meet the baby growing inside of her. But during her pregnancy, Williamson had these haunting nightmares that there was something wrong with her baby.
After almost 10 hours of labor, a baby boy named Shane arrived. But Williamson’s joy immediately shifted to dread as she saw her nightmare become her reality: Upon cutting the umbilical cord, her baby turned blue. Shane was born with a left-sided congenital diaphragmatic hernia (CDH) and multiple other birth defects.
CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year — and between 35 and 40 annually in North Carolina. To put it into perspective, it occurs about as often as cystic fibrosis and spina bifida.
Sadly, half of all CDH-diagnosed babies do not survive. Some survivors 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.
On a mission
What Williamson expected to be a short hospital stay in the maternity ward turned into relocating to North Carolina from South Boston, Va., to spend 10 months sitting by Shane’s bedside at Duke University Medical Center in Durham. Having never heard of CDH, she immediately searched for a support group online but couldn’t find one that could answer her questions or calm her fears about her son’s diagnosis. After spending hundreds of hours in the hospital’s medical library researching CDH and only finding support from parents she met during Shane’s hospital stay, Williamson believed her mission was to create a CDH support group herself.
In 1995, she formed the charity CHERUBS — her special name for babies with CDH — in Wake Forest. The grassroots nonprofit organization is run by parents of children born with a severe birth defect. Today, it is the world’s first and largest CDH organization, with more than 3,000 members in 38 countries and all 50 states.
“I wanted to create an organization to help parents of children with CDH because I know exactly how it feels to have your dreams of delivering a healthy baby suddenly turn into your worst nightmare,” Williamson says. “I understand the emotional roller coaster that these families experience, so to be able to give them a place to turn for support is very rewarding.”
A common thread
Sadly, Shane passed away in 1999 when he was just six years old. He spent his last weeks in the hospital with a recurrent CDH and a very rare complication called a gastropleural fistula, or an opening between his stomach and his lung that caused pneumonia.
But there are CDH stories with happier outcomes. Survivor Lizz Lopez was born in 1972 in Burlington. Like Williamson, Lopez’s mom had a terrible feeling that something was wrong with her while she was pregnant. She even told her husband that they needed to start saving money for medical bills. Lopez was born blue and not breathing and was immediately rushed to Memorial Hospital at UNC, where X-rays revealed that something was not right. Surgeons weren’t quite sure how bad the situation was until they opened her up. She had her first CDH surgery at four hours old and has been fine ever since.
Modern technology certainly has made in-utero diagnosis more common. However, according to Dr. J. Duncan Phillips, surgeon-in-chief at WakeMed Children’s Hospital in Raleigh, a 2009 CDH study group registry of 65 medical centers throughout the world revealed that roughly 50 percent of parents are unaware that their baby has CDH until after he or she is born.
“If the defect is picked up by ultrasound, then the pregnant mom is usually referred to a perinatologist for high-risk pregnancy and a level 3 ultrasound is conducted,” Phillips says.
In Williamson’s case the traditional ultrasound did not pick up the defect, and Lopez was born in the early 1970s during a time when ultrasounds in physicians’ offices were uncommon.
Living with CDH
Williamson can remember vividly the day her life changed. With that one breath, a huge amount of fear and anxiety flooded in. She remembers Shane being whisked away, and the frustration of not knowing if her baby would survive.
Things change by the minute or the hour with CDH babies. Phillips recommends that parents stay calm and wait for frequent updates from their medical teams. Some babies do well, but ones that are struggling are referred to hospitals that are more equipped to handle the severity of their defects.
“Some patients may even be candidates for treatment in utero prior to delivery,” Phillips says. “There are big fetal centers across the country, including in San Francisco, Philadelphia and Cincinnati.”
To date, there is no known cause for CDH. The Internet provides parents and other concerned family members with an opportunity to do what health care providers and government agencies should be doing but often don’t: come up with support groups for other parents and family members.
Fortunately for parents-to-be or new parents who have been given a CDH diagnosis for their child, they have a place to turn. CHERUBS offers a place to get answers to their questions, talk with other parents of CDH children and learn more about some of the long-term effects from survivors.
“We are really very grateful to parents like Dawn for taking this job upon themselves,” Phillips says.
Kelly Maicon is a freelance writer based in Raleigh.
Monday, September 12, 2011
CHERUBS North Carolina Get-Together Picnic - September 24, 2011 in Winston-Salem, NC
CHERUBS NC Picnic!!!
Date: Saturday September 24, 2011
Time: Afternoon - 2-6 pm?
Place: Miller Park Shelter #2
400 Leisure Lane
Winston-Salem, NC 27103
Food: Potluck - bring your own favorites
Grill is available
There is a playground near this shelter as well.
Also Kendrah is bring bottled water and ice.
Directions:
From I-40 E:
Business 40 E
Exit 3A Knollwood Street
Turn Right onto Knollwood
Turn Left onto Queen Street
Miller Park & Parking lot is on your right
From I-40W
Business 40 W
Exit 3A Knollwood Street
Turn Left onto Knollwood
Turn Left onto Queen Street
Miller Park & Parking lot is on your right
Wednesday, November 10, 2010
CHERUBS and CDH on TV
A few weeks ago, CHERUBS was on television to talk about CDH and the Masquerading Angels Ball. So much has been going that we forgot to post it on our blog, so here it is!
http://triangle.news14.com/content/in_depth/631902/in-depth--dawn-williamson--cherubs
http://triangle.news14.com/content/in_depth/631902/in-depth--dawn-williamson--cherubs
Sunday, October 10, 2010
CDH HOPE Totebag Project Baby Shower - October 16th in Wilkesboro, NC
Calling all NC family and friends.... the Younce family is hosting a CHERUBS Baby Shower to collect items for our CDH HOPE Totebags - Giving hope to families of babies diagnosed with CDH !!!! There will be games and lots of party fun! Just like a regular baby shower but for a great cause!
| Time | Saturday, October 16 · 2:00pm - 5:00pm |
|---|---|
| Location | The Ruby Pardue Blackburn Adult Health Care Center 1915 West Park Drive Suite 200 North Wilkesboro, NC |
| Created By | |
|---|---|
| More Info | Wish List Disposable Cameras Baby Blankets (any material but wool) Button up newborn or preemie shirts Small or preemie pacifiers Travel packs of tissue Chapstick Plaster Handprint and Footprint Kits Baby Booties Baby Hats Small bottles of lotion Small bottles of hand sanitizer Small picture frames ( for the baby's hospital bed) Baby's first haircut holders Gas Cards Restaurant gift cards (national chains please) 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. 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. CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. CHERUBS is the original CDH non-profit organization founded in 1995 to help families and medical care providers of children born with CDH. What is CDH? 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.See More |
Saturday, October 2, 2010
Press Release: Congenital Diaphragmatic Hernia Charity Recruits Voters to Win $375,000 to Help Critically Ill Babies And Their Families
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
10-01-2010
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.”
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 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.
http://www.voteforcdh.org
http://www.cdhsupport.org
http://www.cherubsangelball.org
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
10-01-2010
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.”
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 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.
http://www.voteforcdh.org
http://www.cdhsupport.org
http://www.cherubsangelball.org
Monday, September 20, 2010
CHERUBS in the Durham Herald-Sun
http://www.heraldsun.com/view/full_story/9590190/article-CHERUBS-nonprofit-receives--30K
Monday, August 23, 2010
A peak into the chaos of CHERUBS Central....
Located in beautiful Wake Forest, NC just outside of Raleigh, hidden in the spare bedroom of a house in suburbia is our international headquarters...
CHERUBS President & Founder, Dawn Williamson
It's chaos, but it's organized chaos and here is where the magic happens and where we help over 3300 families affected by Congenital Diaphragmatic Hernia.
Tuesday, August 17, 2010
Soap star Patsy Pease from Days Of Our Lives helping local charity in national contest to win $100,000 for critically ill babies
From MyNC.com - http://wake.mync.com/site/wake/Community/story/54414
Tweet This! http://mync.com/site/54414/
WAKE COUNTY, N.C.
CHERUBS is a local charity, based in Wake Forest. We are currently battling between 1st and 2nd place in a national contest on Facebook for $100,000.
Patsy Pease is the celebrity spokesperson for CHERUBS, having a son who survived CDH.Patsy has been helping us through Facebook to get votes.
The Raleigh News & Observer did a piece on us in Sunday's paper.
The APX contest ends THIS week. We need all the local support and help that we can get. $100,000 would more than triple our charity's small annual budget—we help families in 38 countries so we need funds desperately for research and family support. CHERUBS also has 2 projects in the Pepsi Refresh contest
Congenital Diaphragmatic Hernia is a birth defect that occurs in 1 in 2500 babies; as common as Cystic Fibrosis and Spina Bifida. Over 600,000 babies have been born with CDH since 2000—it has taken the lives of over a quarter million of these children. It occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of these babies do not survive. The cause is not known. CHERUBS is the world's first and largest CDH charity and was founded right here in the Triangle in 1995 after my own son spent his first 10 months in the intesive care unit at Duke and then many subsequent hospitalizations at both Duke and UNC until he passed away at age 6. Please consider doing a piece on this story—we so need the votes and awareness for CDH. Thank you so much for your time and assistance
Patsy Pease and her son, Russell, a CDH survivor
Tweet This! http://mync.com/site/54414/
WAKE COUNTY, N.C.
CHERUBS is a local charity, based in Wake Forest. We are currently battling between 1st and 2nd place in a national contest on Facebook for $100,000.
Patsy Pease is the celebrity spokesperson for CHERUBS, having a son who survived CDH.Patsy has been helping us through Facebook to get votes.
The Raleigh News & Observer did a piece on us in Sunday's paper.
The APX contest ends THIS week. We need all the local support and help that we can get. $100,000 would more than triple our charity's small annual budget—we help families in 38 countries so we need funds desperately for research and family support. CHERUBS also has 2 projects in the Pepsi Refresh contest
Congenital Diaphragmatic Hernia is a birth defect that occurs in 1 in 2500 babies; as common as Cystic Fibrosis and Spina Bifida. Over 600,000 babies have been born with CDH since 2000—it has taken the lives of over a quarter million of these children. It occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of these babies do not survive. The cause is not known. CHERUBS is the world's first and largest CDH charity and was founded right here in the Triangle in 1995 after my own son spent his first 10 months in the intesive care unit at Duke and then many subsequent hospitalizations at both Duke and UNC until he passed away at age 6. Please consider doing a piece on this story—we so need the votes and awareness for CDH. Thank you so much for your time and assistance
Monday, August 16, 2010
New Raffle - Win $1000 by voting for CHERUBS in the APX Gives Back Contest!
Yes, our charity is giving away $1000 THIS week!
Why? Because we need your votes to win $100,000 for CDH Research and Support!!!!!
- You can participate from ANY country. You must be 13 or older!
How do you enter the raffle?
- Vote for CHERUBS in the Eastern Division in the APX contest at http://www.facebook.com/apxalarm?ref=mf
- Go to our contest FB page at http://www.facebook.com/event.php?eid=117557684963297 and click "Attend"
- Post Voted! (and only that) on the event wall and you're entered into a drawing to win $1000!
NOW, WE HAVE MORE OPPORTUNITIES FOR YOU TO SUBMIT MORE RAFFLE ENTRIES!!!!! GREATLY INCREASE YOUR CHANCES OF WINNING $1000!!!!!!
1. Repost on Facebook! (good for 1 more submission per day)
* Post: I just voted to help CDH babies and entered a chance to win $1000 by helping @CHERUBS - The Association of Congenital Diaphragmatic Hernia Research Awareness and Support to raise $100,000 for CDH Research and Support! http://tinyurl.com/win1000cdh (tag us in that post)* And then, on the event page instead of posting Voted! Post Reposted!
2. Tweet on Twitter! (good for 1 more submission per day)
* Tweet: @cherubs #voteforcdh I just voted to help CDH babies and entered a chance to win $1000! http://tinyurl.com/win1000cdh* And then, on the event page instead of posting Voted! Post Tweeted!
3. Post on your blog or site. (good for 1 more submission per day)
* Post this attach link and all text on it to your site or blog.* And then, on the event page instead of posting Voted! Post On-Line! with a link to your site or blog
4. Post an FB page or group. (good for up to 10 more submission per day)
* Post - I just voted to help CDH babies and entered a chance to win $1000 by helping @CHERUBS - The Association of Congenital Diaphragmatic Hernia Research Awareness and Support to raise $100,000 for CDH Research and Support! http://tinyurl.com/win1000cdh (tag us in that post, must type and not copy and paste or the tag won't work!)* And then, on the event page instead of posting Voted! Post: CDH Awareness! with a link to the FB page or group* Up to 10 CDH Awareness! entries per day! Must be for 10 different pages or groups!
5. Recruit FB friends to vote. (good for up to 10 more submission per day)
* Get your FB friend to vote and attend on our event page just like a normal vote but have them post "Voted! Recruited by ______________" (your name)* And then, YOU can post another comment on the event page posting "I recruited ________________ today!" (their name).* Up to 10 Recruited by ! entries per day! Must be for 10 different friends and your FB friend can only be recruited once by 1 person!
Yes, we check the authenticity of raffle entries. :)
The APX Gives Back Contest - $100,000 for CDH Research & Support
http://www.facebook.com/apxalarm?ref=mf
FacebookContest sponsored by APX Alarms. CHERUBS is currently battling between1st and 2nd place in this National contest! Money raised will be usedfor Congenital Diaphragmatic Hernia Research and Support services!
Here is how to vote at APX:
- Go to http://www.facebook.com/apxalarm?v=app_121215224555298&ref=mf
- Then click LIKE.
- Next click the "Start nom and voting"
- Click on the blue logo for Eastern charities5. Scroll down (load more if necessary) and find CHERUBS and endorse us!
Don't forget that we are in the Pepsi Refresh contest too! http://www.refresheverything.com/search/?q=cherubs
For more on CHERUBS and CDH, visit http://www.voteforcdh.org/
The following charities are supporting us in the APX contest so please let's show them our support too!!!! :)
- Eastern - CHERUBS of course. :)
- Pacific - Handprints of Hope
- Central - Military Moms and Wives
- Mountain - Now I Can Foundation
- Canada - Quest Theatre Society
http://www.facebook.com/apxalarm?ref=mf
http://www.voteforcdh.org
cherub Landon Kelly
cherub Braden Holt
cherub Aaron Younce
cherub sibling Nyah Kelly
CDH survivor Jessica Barry!
CDH survivor Sofia Carman!
CDH Survivor Jason Collins!
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