Come join us or a magical night for a good cause. Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember.
Money raised from this event will go to CHERUBS to fund services to further help families of babies born with Congenital Diaphragmatic Hernia. CHERUBS is a 501(c)III international children's charity.
Attire: Our FORMAL masquerade ball encourages men to wear tuxedos and women to wear floor-length gowns. FORMAL period costumes are welcome. Formal evening gowns are welcome. Formal masquerade masks are highly encouraged. Not acceptible; typical Halloween costumes, short dresses, street clothes and scary masks.
Age Requirement: You must be 21 years old or older to attend. CHERUBS reserves the right to refuse ticket sales when necessary.
Live music by Raleigh based band, The Stone Age Romeos!
CHERUBS is a 501(c)III organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of April 2012, we have over 4000 members in all 50 states and 54countries. Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. The cause is not yet known.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)
WAKE FOREST, NC (April 9, 2012) – On Thursday, April 19, U.S. Sen. Jeff Sessions (R-AL) will meet with over 250 people participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of a birth defect called congenital diaphragmatic hernia (CDH). Sen. Sessions’ two-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.
“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.”
The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 10:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.
Massachusetts General's CDH Genetic Study Lab will have representatives walking in the parade. During their visit to Washington they will take blood samples from relatives of CDH victims for genetic research.
“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Families from all corners of the country plan to participate in the parade, and we expect the number to grow as we get closer to the event.”
Several other cities across the U.S. are hosting a cherubs parade on the same day including, Chicago and Peoria, Ill.; Denver; Portland, Ore.; Seattle; and St. Louis. The St. Louis Fetal Treatment Institute, known for conducting in utero procedures on CDH babies, has been an integral part of organizing their local event. There will also be a national candle lighting in the U.K.
A virtual parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos from their smaller awareness/fundraiser events.
If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhsupport.org.
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Additional Events:
Washington DC Parade of CHERUBS takes place on April 19, 2012 starting at the Lincoln Memorial at 10:00. It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor. http://cdhawareness.eventbrite.com
The Denver Parade of CHERUBS takes place on April 19, 2012, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in a three-stage balloon release in memory of our CHERUB Angels, in honor of our CHERUB Warriors, and in anticipation of those CHERUBS who will arrive soon. The event was organized by Nicolle Colvin the Colorado State Representative for CHERUBS, Victoria Grover, and Jennifer Rodi. http://denverparadeofcherubs.eventbrite.com/
The Peoria Parade of Cherubs takes place on April 22, 2012 in Glen Oak Park beginning at 2:00 pm. The event was organized by Kristin Aigner and Sarah Polich. Kristin is an RN in the NICU and coordinates CDH Follow up Clinic at OSF St Francis Medical Center and is the sister of Christopher, who was born with CDH in 1973. Christopher grew his wings and flew to Heaven two months after he was born. Sarah 's daughter, Kalianna, was born with CDH and is now a happy, thriving 8 month old. The Parade route is around Glen Oak park, followed by a ceremony to honor Cherubs in Heaven, ending with the joy of being together, refreshments and kids playing in the park. http://peoria2012paradeofcherubs.eventbrite.com/
The Seattle Parade of CHERUBS takes place on April 19, 2012 and is being organized by CHERUBS Washington State Representative, Christina Stembler, whose Son, Hunter Stembler, was born with CDH. Christina invites Everyone that has been affected in any way by CDH, to take part in the parade. Meet on Pier 62/63 next to the Seattle Aquarium at 11:00 A.M. We will be walking to Waterfront Park and Releasing Balloons in Loving Memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a Daily basis. http://seattleparadeofcherubs.eventbrite.com/
CHERUBS is working with Children's Memorial Hospital to put on the Chicago Parade of Cherubs. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizinng the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Oz Park to pay respect to all those Cherubs lost. Then they will be walk 1.2 miles by the hospital and the Ronald McDonald House (which so many CDH families frequent during their child's often long stay at the hospital). Close to 70 people (from three states) are expected to participate in this awareness event. http://chicagoparadeofcherubs.eventbrite.com/
The St Louis Parade of CHERUBS takes place on April 19, 2012 and is a joint project of CHERUBS and the St. Louis Fetal Care Institute. It will include a walk around the hospital grounds, a presentation, candle lighting and lighted balloon release. http://stlouis2012paradeofcherubs.eventbrite.com/
Oregon & SW Washington members of CHERUBS will be holding Portland's "Parade of Cherubs" for the International CDH Awareness Daily Celebration in conjunction with several other cities in the USA & UK on Thursday, April 19th from 1:00 pm - 3:00 pm at Legacy Emanuel Hospital in Portland, OR. The local event is being coordinated by CHERUBS Oregon Co-Rep grandmother Shelly Moore & mother Alicia Gilbert to CDH angel Jayden Gilbert who died in March of 2010 after a 23 day fight against CDH & complications, and member Andrea Martin whose 12 year old daughter Sarah is a CDH survivor. http://portlandparadeofcherubs.eventbrite.com/
CHERUBS United Kingdom Representatives Clair Maher and Melanie Parsons are working with member Cara Stevenson to coordinate a national Light Up the Night Event with candles and lanterns. https://www.facebook.com/cdhsupport#!/events/248708328546723/
A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/CherubsVirtualParade
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.
The Volunteer Center of Durham's 17th Annual GREAT HUMAN RACE is a 5k run and community walk that supports area nonprofits. This unique fundraising event supports 100+ nonprofits, schools and faith-based groups
provides an opportunity for any nonprofit agency to raise money for their own organization enables businesses and individuals to support the nonprofit of their choice has raised over $1.6 million since it's inception in 1996
broke fundraising records in 2011, raising $260,000 leading the way, Coalition to Unchain Dogs, raising over $34,000 for their organization expecting 1,000 runners and 2,000 walkers in 2012!
There are plenty of ways to get involved...run, walk, volunteer, donate or raise money for your favorite nonprofit.
The Great Human Race is excited to announce a NEW event venue and course Northgate Mall, in Durham, NC, is our new host. We will be able to expand our Nonprofit Marketplace and continue to offer the popular kids inflatable playground area, exciting local entertainment and refreshments. Parking is plentiful and Northgate Mall is easily accessible from all directions.
The new 5k course will wind through the historic Watts Hospital-Hillandale neighborhood. This gently rolling course will take runners and walkers through one of the loveliest and most active neighborhoods in Durham, a grand urban gesture.
Event Details:
Date: Saturday, March 24, 2012 (Rain or shine)
Location: Northgate Mall (near Sears Automotive) www.northgatemall.com
Day of Race Runner Registration: begins: 7:00am
Run starts: 8:30am
Walk starts: Immediately following runners
Come join us or a magical night for a good cause. Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember.
Money raised from this event will go to CHERUBS to fund services to further help families of babues born with Congenital Diaphragmatic Hernia. CHERUBS is a 501(c)III international children's charity.
Attire: Our FORMAL masquerade ball encourages men to wear tuxedos and women to wear floor-length gowns. FORMAL period costumes are welcome. Formal evening gowns are welcome. Formal masquerade masks are highly encouraged. Not acceptible; typical Halloween costumes, short dresses, street clothes and scary masks. This event is no longer black & white and all colors of attire are welcome.
Age Requirement: You must be 21 years old or older to attend. CHERUBS reserves the right to refuse ticket sales when necessary.
CHERUBS is a 501(c)III organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of April 2008, we have over 2250 members in all 50 states and 33 countries. Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. The cause is not yet known.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
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 Maicon
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.
Cheryl Sandoval is mom to CDH survivor, Brandon. She lives in Fayetteville and is dedicated to helping CDH families in NC.
Dawn Williamson is mom to cherub with wings, Shane Torrence. She lives in Raleigh is also the founder of CHERUBS.
You can reach us at nc@cherubs-cdh.org
CDH Awareness Song and Video
Song written by The Jammies for CDH Families. iTunes.com proceeds donated to CHERUBS. This video features over 700 CDH patients. Please feel free to share to help raise Congenital Diaphragmatic Hernia Awareness!
CHERUBS is an IRS recognized 501(c)III organization run solely by volunteering CDH parents, grandparents and survivors working to help other families affected by Congenital Diaphragmatic Hernia. Please donate to help further our work.
Diamond Sponsor Halloween & More
2012 Sponsorships now available! - Sponsor or donate auction items in honor/memory of your cherub!
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. The cause is not yet known.
Come join us or a magical night for a good cause. Celebrity guests, enchanting decor, amazing music, a casino, silent auction and beautiful attire will make this a night to remember.
