MEET OUR VOLUNTEERS - Trish Collins

Trish Collins Teresa Collins (Trish), Co-representative, Florida, has been a member of CHERUBS since 2008. Her daughter Rebecca Dawn was born October 7, 2005 diagnosed at birth with left-sided CDH. Rebecca was placed on ECHMO soon after birth and remained on it for 10 days. She then had her hernia repair surgery, 5 days after that on October 25, 2005 she lost her battle and passed away. Teresa now has a son, Ashton Fenway born in 2007. Teresa has an Associates of Science degree in Medical Billing and is an active member of CHERUBS and Thoroughbred Horse Rescue.

Gainesville Parade of Cherubs for April 19th

 Join us for April 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!!!!

Gainesville, FL Parade

• On Facebook - https://www.facebook.com/events/129625617198348/
• Register on Eventbrite - http://cdhawarenessday-2013shands.eventbrite.com/
• Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
• CDH reunion registration at https://ufandshands.org/events/congenital-diaphragmatic-hernia-cdh-patient-reunion 
• 50% of money raised will be donated to the Shands for Children Hospital for CDH Research
• Contact Vanessa, Trish or Rhonda with any questions about this event at florida@cherubs-cdh.org

PRESS RELEASE - Local Nonprofit Raises and Awards $20,000 for Research Against Deadly Birth Defect, Congenital Diaphragmatic Hernia

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 20^th 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 31^st, ending an incredible year for CHERUBS.  

“In 2012 we marched on Capitol Hill and in 7 other large cities on April 19^th, 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 19^th 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.

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.  

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

CHERUBS sponsors $10,000 Facebook Contest to Benefit CDH Research

Something very exciting is going on at CHERUBS and we want YOU to be a part of it! Thanks to all of you wonderful members and fans for buying and selling raffle tickets we are ready to award a $10,000 CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH GRANT!!!! 

We could choose a hospital ourselves but we thought it would be more fun, and raise more awareness, to get your help! So the hospital with the most votes by December 30th will win $10,000 for CDH Research!!!!!!!!!!!!

Vote at https://www.facebook.com/questions/10151158907097006

In the running are the following CDH labs and clinics:

• Congenital Diaphragmatic Hernia (CDH) Genetic Research Study
• DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab 
• St. Louis Fetal Care Institute 
• Baylor College of Medicine CDH Genetic Lab 
• The Center for Fetal Diagnosis and Treatment at CHOP 
• UCSF Fetal Treatment Center 
• Shands at the University of Florida CDH Clinic 
• Boston Children's Hospital CDH Clinic 

 These facilities were chosen based on research history and long-term research so that the most families can be helped.

The prize money was raised by members and friends of CHERUBS through a 50/50 raffle fundraiser over the summer and early fall.   9003 tickets were told to raise $9003.00.  The addition $997.00 comes from CHERUBS CDH Research Fund.

Vote at https://www.facebook.com/questions/10151158907097006

Congenital Diaphragmatic Hernia

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive.  The cause is not known.  Over a half million babies have been born with CDH since 2000. 

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.  1600 babies are born with CDH every year in the United States.  Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.


CHERUBS  - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

CHERUBS is the world's first, oldest, and largest CDH non-profit organization.  We are truly a grassroots organization - CDH families creating something out of nothing when there was no other CDH group, information and services in 1995.  CHERUBS was created to make sure that no family endures Congenital Diaphragmatic Hernia without support or accurate information.  Our Board of Directors includes CDH parents, grandparents, survivors, nurses, doctors and the world's top CDH researchers. CHERUBS is run solely by volunteers and donations.  At CHERUBS, every CDH family has an opportunity to honor or remember our children while doing good to help others and work together as a CDH community. No other charity in the world has such a respected, educated or experienced group of leaders who care so much about the CDH community.

CHERUBS was not created by one family or for one family.   It was not created in honor or in memory of one child.   It is, and has always been, a group effort to help all families affected by Congenital Diaphragmatic Hernia.   It is built upon the experiences of CDH families, collaborations with CDH researchers and a strong desire to raise CDH awareness through projects and events created in honor and in memory of cherubs.   CHERUBS was named for all the babies lost to Congenital Diaphragmatic Hernia.

We are proud to serve over 4100 families in 54 countries and all 50 states affected by CDH since our creation.   Through our dozens of free ground-breaking services and the friendships made within our member community, CHERUBS has positively affected the lives of 1000's of CDH families and inspired many new CDH charities and project who have followed in our footsteps. We will continue to lead until Congenital Diaphragmatic Hernia is no more. We are devoted to finding the cause, prevention and best treatments for CDH.

Learn more about us through the links to the left.

CDH Charity "Real Hope for CDH" needs votes in the Chase contest!

http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation

There is only 1 CDH charity still standing in the Chase Community Giving Contest - Real Hope for CDH.

All the other CDH charities fell far too behind to possibly make the top 200.  :(      Charities have to make the top 200 listed (first 10 pages of rankings) - not be ranked less than 200.  

Real Hope for CDH is barely hanging on! Let's work together to get at least 1 CDH charity in the top 200! They need votes!!!



You only have to vote once!

http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation

If ALL CDH parents, grandparents, survivors, nurses, doctors, family and friends... who care about CDH babies voted, we can raise $20,000 for CDH research for this amazing charity.

Real Hope for CDH is an amazing charity that was created by the families of the patients of Dr. David Kays at the University of Florida / SHANDS. Dr. Kays is the founding father of "gentle ventilation" for CDH babies.

100% of money won in this contest will go directly to CDH Research!!!!!!!

Please vote and repost!!!

http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation

Please Support "Real Hope for CDH" in the Chase Community Giving Contest!

Chase Community Giving is awarding more money to deserving charities again this year!!!   We were proud to be a part of the competition last year and place fairly well thanks to the support of the CDH community!!!

This year for some reason several CDH charities were not included into the contest.  We contacted Chase but they are not adding anyone else to this particular competition.   :(

But that's ok because there is another WONDERFUL CDH charity that is in the contest!   They are fellow members of the Alliance of Congenital Diaphragmatic Hernia Organizations and they are very dedicated, professional and worthy charity!  We are proud to throw all of our support behind Real Hope for CDH and hope that the entire CDH community does so as well!

Voting will start on June 15th!

http://apps.facebook.com/chasecommunitygiving/charities/201505045-real-hope-for-cdh-foundation

"Real Hope for CDH is a parent group consisting of and dedicated to families of children born with Congenital Diaphragmatic Hernias (CDH). Members' babies were either born at Shands Children's Hospital at the University of Florida or transported there shortly after birth. All of these babies were fortunate enough to have been treated by pediatric surgeon Dr. David Kays."

You may have heard of "Kays Kids" as Real Hope for CDH was once called before they changed their name several years ago.  They were the first charity to bring "hope" to the CDH community.

CHERUBS has been lucky enough to work with Dr. Kays and this group for a very long time.    They are a wonderful organization and we are proud to support their work and hope you will too!

DISCLAIMER:   CHERUBS cannot and does not promote any particular hospital or surgeon.   Nor are we publicly endorsing a survival rate because EVERY CHERUB IS DIFFERENT!   We are promoting the good work done by this wonderful charity to raise funds and support for Shands and the patients of Dr. Kays!  :)