Saturday, March 10, 2012

Eli's Run - Wilmington, NC on March 17th

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.

CHERUBS In The Great Human Race on March 24

CHERUBS is thrilled to once again participate in the Great Human Race!!!!

Come join us and raise money and awareness for CDH!


Make sure to list CHERUBS as your charity!

Facebook Event Page -

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, 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)
Day of Race Runner Registration: begins: 7:00am
Run starts: 8:30am
Walk starts: Immediately following runners 

Make sure to list CHERUBS as your charity!


2012 CHERUBS Masquerading Angels Ball - Save the Date!

2012 CHERUBS Masquerading Angels Ball

October 20, 2012
6:00 pm - Midnight
Hampton Inn & Suites in Brier Creek
Raleigh, NC

We have just begun planning our 2012 event.  Stay tuned for more information!!!!

Formal Charity Masquerade Ball

Masquerade BallCome 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.

Formal Charity Masquerade Ball

Our Organization:
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.

What is CDH?
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.

Wake Living Magazine - "One baby’s congenital defect leads to a nationwide support group"

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 CaƱez, 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.