SUMMARY:
Raleigh, NC -
CHERUBS, a non-profit organization based in Wake Forest has awarded $20,000 to
two Congenital Diaphragmatic Hernia Research facilities based on a contest held
this month on their Facebook page and a grant raised by the family of a baby
lost to CDH.
Congenital
Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing
abdominal organs to migrate into the chest cavity and preventing lung growth.
It affects 1 in every 2,500 babies, representing approximately 1,600 babies in
the United States each year, half of which do not survive.
CHERUBS is the world
largest organization for CDH and was founded in Creedmoor in 1995. It
serves over 4,200 patients and families in 54 countries. Even though the
charity is 17 years old, it still struggles for funding and is powered by
volunteers and donations. All of CHERUBS services are free to families
affected by CDH. Though small, this determined group of parents have done
amazing things for CDH awareness, research and support.
$20,000 makes a great
deal of difference in CDH research and support, for a cause where there is very
little awareness and even less research funding. With CDH families
rallying 100’s of people to donate and purchase raffle tickets this year to
raise $10,000 and 1 family raising $10,000 alone themselves, this money is hard
earned for a cause very close to all their hearts.
Local
Nonprofit Raises and Awards $20,000 for Research Against Deadly Birth Defect,
Congenital Diaphragmatic Hernia
12-30-2012
Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) awarded their first $10,000 research grant in 2011 to the CDH Genetic Lab at Massachusetts General Hospital. They hoped to double that amount in grants in 2012 and with the help of charity members they reached that goal.
For many months during the summer and early fall, members of the
charity raised money by selling 50/50 raffle tickets. They were able to raise $9,030 for research
and a $9,030 raffle prize that was awarded at their annual Masquerade Ball in
Raleigh on October 20th to local citizen, Mark Stamper. Combined with donations the charity had their
first $10,000 grant.
“Our Vice-President, Ashley Barry, came up with the genius idea to
allow our members to vote on who would receive the grant through a contest on
Facebook. This allowed the families to
participate in the decision making and relieved our Board of having to make
such a difficult choice between so many wonderful research institutions. It also helped us to raise a large amount of
awareness of Congenital Diaphragmatic Hernia through social media” says CHERUBS
President and Founder, Dawn Torrence Williamson.
Raise awareness they did with hospitals competing for votes by
posting to 1000’s of their own Facebook fans and sending out e-mails to their
mailing lists asking for votes. CHERUBS
Facebook page reached close to 11,000 fans and 2,000 people shared the contest
poll.
“Over 8,000 people voted in our little contest” says
Williamson. “It got very heated between
2 hospitals when they started shifting between first and second place over the
final 2 days. E-mails were flying,
posters were being hung up all over towns, 1,000’s of Facebook statuses were
asking for votes. Families are very
loyal to their children’s surgeons and hospitals and you could see that
reflected in the voting. I think all of us were on pins and needles
until the very end”.
In the end, The Center for Fetal Diagnosis and Treatment at CHOP
(Children’s Hospital of Philadelphia) won with 3,474 votes to Shands Hospital
for Children’s 3,380 votes.
Also in the contest were St. Louis Fetal Care Institute, UCSF
Fetal Treatment Center, the Congenital Diaphragmatic Hernia (CDH) Genetic
Research Study at Massachusetts General, DHREAMS Research Study (Congenital
Diaphragmatic Hernia) at Columbia University, Baylor University Medical Center
at Dallas and Boston Children's Hospital.
All centers world-renowned for their research on Congenital
Diaphragmatic Hernia.
The charity added some suspense to the mix with the announcement that
another research facility will also win $10,000, making that $20,000 going to
CDH Research.
“One of our members, the family of Tatum Ashley Larson, did an extraordinary
thing this year. They raised over
$10,000 on their own through donations to our charity in her memory. They requested that DHREAMS receive a grant and
we are honored to be a part of this generous gift to help other babies born
with CDH” says Williamson.
Tatum’s
family released the following statement;
“After 9 months of excitement and anticipation Tatum
Ashley Larsen was born on September 14, 2012. When she was born, she opened her
eyes and looked at us but then she didn't cry. Unbeknownst to us, she suffered
from Congenital Diaphragmatic Hernia. She was born at 1:14pm and passed at
2:15pm the same day. She weighed 5.9 pounds and was 18 3/4 inches. We have
raised over $10,000 in her honor for CHERUBS and are excited to have this money
be donated in her name to the DHREAMS research foundation at Columbia, where we
hope a cause will be found for this defect. This donation gives her such purpose
in this world and helps give us peace.”
The charity hopes to present both facilities with ceremonious large
checks during events on the International Day of Congenital Diaphragmatic
Hernia Awareness on April 19th, even though the cashable research grant checks
will be on their way on December 31st, ending an incredible year for
CHERUBS.
“In 2012 we marched on Capitol Hill and in 7 other large cities on
April 19th, we introduced Senate Bill S.3396 with Senators Jeff
Sessions (R-AL) and Ben Cardin (D-MD), sent out over 300 care packages to
families of newborns with CDH, held an international conference for families in
San Francisco and so very, very much more.
We are very blessed with wonderful members and volunteers. 2012 has not been a bad year for our grassroots
charity with the nickname ‘the little charity that could’, run on a shoe-string
budget and loves of determination. Never
underestimate parents working hard to save the lives of their children” – says Williamson.
The charity will be raising money for many different research
centers in 2013 on April 19th with Parades of Cherubs at several
hospitals and a national fundraiser.
CHERUBS will 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.
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 December 2012, CHERUBS has over 4200 members in all 50 states and 54 countries. Board Members include local business owners, the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH.
http://www.facebook.com/cdhsupport
http://www.cdhsupport.org
About The
Center for Fetal Diagnosis and Treatment at CHOP (Children’s Hospital of
Philadelphia)
Since
its start in 1855 as the nation's first hospital devoted exclusively to caring
for children, The Children's Hospital of Philadelphia (CHOP) has fostered
medical discoveries and innovations that have improved pediatric healthcare and
saved the lives of countless children.
Experts from many areas of CHOP are dedicated to providing the very best medical and surgical care for congenital diaphragmatic hernia (CDH), and perform basic, translational and clinical research to improve the outcomes and lives of those affected by CDH The Center for Fetal Diagnosis and Treatment at CHOP is the world’s largest fetal diagnosis and treatment program and sees families from all 50 states and over 50 countries., The Center has cared for more than 13,000 patients with a prenatally diagnosed birth defect like CDH.
CHOP is home to the Garbose Family Special Delivery Unit, the world’s first birth facility exclusively dedicated to mothers carrying babies with known birth defects like CDH. This Unit is paramount for mothers carrying CDH babies, as it avoids a transport of their baby who are known to be sensitive to movement and noise. Importantly, the SDU keeps moms and babies together after delivery during this critical time. The SDU provides the highest level of immediate care for the newborn, as well as expert obstetric services for the mother — all within the same pediatric hospital.
Once stabilized, the baby is transported to the Newborn/Infant Intensive Care Unit (N/IICU), where a team dedicated to surgical babies like those with CDH continue to evaluate and carefully monitor the newborn’s condition. CHOP’s ECMO program, one of the largest in the US has provided ECMO support for nearly 150 babies with CDH since 1991. Babies with severely compromised or fragile lungs may require ECMO (Extracorporeal Membrane Oxygenation).
Many children with CDH are born with pulmonary hypoplasia, a condition characterized by small, underdeveloped lungs that affect not only breathing, but also heart function, ability to feed and overall development. CHOP has created a unique Pulmonary Hypoplasia Program (PHP) that provides comprehensive, interdisciplinary care specifically focused on this challenging condition. The Program follows children from infancy to high school. The Program currently follows more than 350 children and provides coordinated clinical care, education, and hope not available elsewhere. CHOP is the only institution studying the neurodevelopmental outcomes of CDH patients: their goal is to improve the understanding of pulmonary hypoplasia so that they can continuously improve care. This information is critical for families facing a prenatal diagnosis of CDH.
However, CHOP’s CDH work does not stop there. CDH is a focus for CHOP’s Center for Fetal Diagnosis and Treatment and Center for Fetal Research, the research arm for the Center and have published over 80 basic, translational and clinical research studies to provide as much information about CDH and hopefully improve outcomes for future generations.
Experts from many areas of CHOP are dedicated to providing the very best medical and surgical care for congenital diaphragmatic hernia (CDH), and perform basic, translational and clinical research to improve the outcomes and lives of those affected by CDH The Center for Fetal Diagnosis and Treatment at CHOP is the world’s largest fetal diagnosis and treatment program and sees families from all 50 states and over 50 countries., The Center has cared for more than 13,000 patients with a prenatally diagnosed birth defect like CDH.
CHOP is home to the Garbose Family Special Delivery Unit, the world’s first birth facility exclusively dedicated to mothers carrying babies with known birth defects like CDH. This Unit is paramount for mothers carrying CDH babies, as it avoids a transport of their baby who are known to be sensitive to movement and noise. Importantly, the SDU keeps moms and babies together after delivery during this critical time. The SDU provides the highest level of immediate care for the newborn, as well as expert obstetric services for the mother — all within the same pediatric hospital.
Once stabilized, the baby is transported to the Newborn/Infant Intensive Care Unit (N/IICU), where a team dedicated to surgical babies like those with CDH continue to evaluate and carefully monitor the newborn’s condition. CHOP’s ECMO program, one of the largest in the US has provided ECMO support for nearly 150 babies with CDH since 1991. Babies with severely compromised or fragile lungs may require ECMO (Extracorporeal Membrane Oxygenation).
Many children with CDH are born with pulmonary hypoplasia, a condition characterized by small, underdeveloped lungs that affect not only breathing, but also heart function, ability to feed and overall development. CHOP has created a unique Pulmonary Hypoplasia Program (PHP) that provides comprehensive, interdisciplinary care specifically focused on this challenging condition. The Program follows children from infancy to high school. The Program currently follows more than 350 children and provides coordinated clinical care, education, and hope not available elsewhere. CHOP is the only institution studying the neurodevelopmental outcomes of CDH patients: their goal is to improve the understanding of pulmonary hypoplasia so that they can continuously improve care. This information is critical for families facing a prenatal diagnosis of CDH.
However, CHOP’s CDH work does not stop there. CDH is a focus for CHOP’s Center for Fetal Diagnosis and Treatment and Center for Fetal Research, the research arm for the Center and have published over 80 basic, translational and clinical research studies to provide as much information about CDH and hopefully improve outcomes for future generations.
http://fetalsurgery.chop.edu
Shands
Hospital for Children’s*
At UF, the chances of
survival for a child born with CDH are dramatically improved because physicians
put their faith in a “revolutionary” treatment strategy rather than a
traditional method – to treat these babies.
And, what is
the revolutionary strategy?
“Less is more,” said pediatric surgeon David Kays, quoting an oft-used cliché.
“Less is more,” said pediatric surgeon David Kays, quoting an oft-used cliché.
By applying gentle
ventilator therapy rather than standard hyperventilation, and delaying
corrective surgery, Kays and his colleagues at the UF College of Medicine
report a 92-percent survival rate among CDH-affected babies who are delivered
and treated at Shands Children’s Hospital at UF compared to the national
survival rate of about 50 percent. UF surgeons reported their success rate in a
study that was published in the September 1999 issue of the Annals of Surgery.
Kays, who was
recruited to UF in 1992 due to his experience in treating CDH babies, learned
the technique from its Columbia University inventors, surgeon Charles Stolar
and ventilation specialist Jen Wung, MD, while serving a clinical fellowship
there. Kays credits Wung with first challenging the universally accepted
hyperventilation method of treating babies with breathing problems.
“In 1985, Jen
Wung told the world that if you don’t hyperventilate the babies, they actually
do better,” Kays explained. “And nobody believed him. Now, we’ve done it here,
and it makes it believable.
“If you think
about it, it’s very counterintuitive. Here you have a baby whose lungs are too
small and don’t have normal gas exchange,” Kays said. “Yet, we’re supposed to
turn the ventilator way up and overventilate. No wonder these poor little lungs
eventually fail from that much ventilation.”
When the UF
study came out in 1999, the only neonatal centers in the nation reporting
results using the novel treatment were Shands, Boston Children’s Hospital and
Columbia. The word is spreading and more centers are slowly implementing the
therapy, Kays said. But not many.
“It’s hard to
convince people that this will work,” Kays said. “It’s very hard for doctors if
they’re not true believers – if they haven’t experienced the therapy
before. It’s hard for them to not escalate the therapy.
“They’re standing
there watching the baby get worse, and if they turn the ventilator up, the
levels get better and the baby looks better. But it’s short term. In the long
term it decreases the baby’s ultimate chance of survival. You have to have a
lot of faith.”
Faith is what it took
for the neonatologist in UF’s neonatal intensive care unit to accept Kays’
approach when he first arrived. He came to their unit and, with CDH cases, took
over control of the ventilator and just about every aspect of the babies’ care.
“The
neonatologists are credited with the success of the program,” said Max R.
Langham Jr., chief of pediatric surgery at the UF College of Medicine who also
has pioneered care for babies with diaphragmatic hernias. “They are there to
protect the care of their kids on the ventilators. It had to be hard for the
NICU doctors to have a surgeon come in and manage the ventilator. That’s just
not the way things are done in most places. But, there was minimal amount of
resistance, and they allowed David to do his thing. You need supporters of the
program. Without it, it’s no more than a good idea.”
*Taken
from http://www.realhopeforcdh.com
https://ufandshands.org/diaphragmatic-hernia-repair-congenital
About DHREAMS
DHREAMS
(Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science)
study was created to improve the understanding of the molecular genetic basis
of CDH. This National Institute of Health (NIH)-funded research team is
composed of health care providers and researchers across the country,
coordinated at Columbia University Medical Center. Multiple medical centers are
enrolling individuals and families with CDH. The knowledge gained through this
research will lead to improved diagnosis, treatment, and quality of life for
individuals and families with CDH.
Company Overview
The
DHREAMS study is an NIH funded multicenter national research study of
congenital diaphragmatic hernia (CDH). The goal of our study is to improve the
understanding of the causes of CDH.
http://www.cdhgenetics.com
Headstone of cherub Tatum Ashley Larsen
CHERUBS' first $10,000 grant to Mass General's CDH Genetic Lab in 2011
