CHERUBS Awarded the Point of Light Presidential Award

BREAKING NEWS:

CHERUBS is very, very proud to announce that we are 2014 Points of Light Presidential Award Winner!




Started by President George H.W. Bush, the Points of Light Program recognizes Americans who work hard to change the world and make a difference in the lives of others. Signed by President Bush himself, this award is given to ALL of our many incredible volunteers at CHERUBS!

Of course we always knew how amazing they all were, but it's phenomenal that the whole country recognizes them as well!

THANK YOU to Tracy Meats and Josh Hensley for being our Volunteer Coordinators and Ashley Barry, our VP, for leading such a wonderful, dedicated group of selfless people who work so hard to help CDH families! We are VERY proud of each and every one of you!!!

http://www.pointsoflight.org/programs/recognition/dpol/awards/5283

Learn more about CDH and how you can support CHERUBS at http://www.SaveTheCherubs.org/

President Dawn Torrence Williamson, Represents CHERUBS at International CDH Workshop in Rotterdam

This week CHERUBS President and Founder, Dawn Torrence Williamson, will be speaking to CDH surgeons and researchers at the International CDH Workshop at Sophia Children's Hospital in Rotterdam, Holland.   An event to showcase the latest in Congenital Diaphragmatic Hernia Research and results from the CDH Study Group, this is a wonderful opportunity for the world's largest CDH charity to share our information and services and to learn how we can better work with researchers worldwide.

Research being presented this year includes:


Kevin Lally, Houston, USA      
The CDH registry, 8000 patients included: so what?

Jay Wilson, Boston, USA
CDH; my personal “toy”; why I still do not understand CDH

Annelies de Klein, Rotterdam, the Netherlands
Human molecular genetics; to whose benefit?

Zornita Stark:  Chromosome abnormalities detected by SNP  microarray in a cohort of 28 infants with congenital diaphragmatic hernia

Paul Brady: Exome sequencing identifies inherited pathogenic variants for congenital diaphragmatic hernia

Artem Burov: Family bilateral congenital diaphragmatic hernia

Daryl Scott, Houston, USA
Genetic modulated animal models; does it bring anything relevant?

Richard Keijzer, Winnipeg, Canada
The Nitrofen rat model of CDH; still applied toxicology?

Robbert Rottier, Rotterdam, the Netherlands
Pulmonary vascular development: maximal confusion?

Heleen Kool: Pericytes play a central role in pulmonary hypertension and the origin of CDH

Rory Morty: Giessen, Germany
The extra-cellular matrix; a different organ?

Kim Schilders: An in vivo approach to determine the dynamic Sox2 interactome of the developing lung

Joshua Ochieng: Ectopic Sox2 expression reprograms mature airway epithelial cells

Martin Post, Toronto, Canada
Of mice and men: relevant for injury and repair?

Patricia Pereira Terra: MicroRNA miR-200b rescues abnormal branching morphogenesis of nitrofen-induced hypoplastic lung explants

Albert Sgrò: Role of the autoptic examination in CDH

Jan Deprest, Leuven, Belgium
PLUG the lung: is it ethical justifiable?

Jamila Al-Maary: Fetal tracheal occlusion for pulmonary hypoplasia in severe congenital diaphragmatic hernia: A systematic review and meta-analysis of survival outcome

Claudia Hagelstein: Repetitive MR Measurements of Lung Volume in Fetuses with Congenital Diaphragmatic Hernia: Individual Development of Pulmonary Hypoplasia during Pregnancy with Calculation of Weekly Lung Growth Rates

Noriaki Usui: Relationship between the L/T ration and the O/E LHR in fetuses with congenital diaphragmatic hernia

Philip DeKoninck: The use of speckle tracking in cardiac function assessment in fetuses with congenital diaphragmatic hernia

Inga Sandaite: Relationship between herniated liver-to-thorax ratio and lung volumes measured

Alexandra Benachi: Liver position in left-sides congenitaldiaphragmatic hernia

Philip De Koninck: Cardiac assessment in fetuses with right-sided congenital diaphragmatic hernia: a case-controlled study

Patricia Terra: MicroRNA miR-200b expression changes during FETO in CDH – a pilot study

Anouk Deden: Exploring the use of nanoparticles to deliver microRNAs for prenatal therapies

Irwin Reiss, Rotterdam, the Netherlands
Respiratory management: the VICI trial; the wrong choice?

Paola Giliberti: Effects of different ventilation modalities on near infrared spectroscopy in operated CDH infants

Francesca Londolfo: Effects on functional residual capacity (FRC) and lung clearance index (LCI) of surgical repair and pleural effusion in high risk left congenital diaphragmatic hernia (CDH)

Osamu Kimura: The way to shorten the postoperative intubation period in neonates with congenital diaphragmatic hernia

Ulrike Kraemer, Rotterdam, the Netherlands
Pulmonary hypertension: a classical example of lack of knowledge!

Rose Gaiteiro: Prostaglandin E1 use in congenital diaphragmatic hernia (CDH); A 13 year review of outcomes (2000-2012) in a single tertiary paediatric academic health science centre

8.42 – 8.54 am    Neil Patel:  Right ventricular diastolic function measured by tissue Doppler imaging predicts outcome in congenital diaphragmatic hernia

Neil Patel: Benefits of the intravenous phosphodiesterase inhibitors sildenafil and milrinone in infants with congenital diaphragmatic hernia

Tomohiko Tanaka: Evaluation of diastolic disorder using diastolic wall drain (DWS) before and after radical surgery for congenital diaphragmatic hernia

Ryo Ishii: The impact of intravenous administration of prostacyclin for congenital diaphragmatic hernia

Tadahura Okazaki, Tokyo, Japan’
Clinical strategies: all wisdom comes from the East?!

Irma Capolupo: SNAP-II score correlates with the outcome of infants with congenital diaphragmatic hernia; a single center, prospective study

Mary Brindle: CDH mortality score: a validated clinical prediction rule to stratify patients with congenital diaphragmatic heria (CDH) based on their risk of mortality

Artem Burov: Intensive care of newborns with congenital diaphragmatic hernia in the perinatal center; Russian experience

Kouji Nagata: The current profile and the future perspectives of congenital diaphragmatic hernia – A nationwide survey in Japan

Thomas Schaible, Mannheim, Germany
ECMO: an expensive way to die?

Pietro Bagolan, Rome, Italy
Surgical approaches: an art without evidence?

Paul Losty: A nationwide survey of prosthetic patch utilisation in
newborns with congenital diaphragmatic hernia

Karin Zahn: Single centre results and patients selection criteria for thoracoscopic repair of congenital diaphragmatic hernia in neonates

Tadahura Okazaki: Thoracoscopic repair for congenital diaphragmatic hernia in neonates: a single center study

Paolo De Coppi, London, UK
Tissue engineering; the future of repair?

Luca Urbani: Diaphragm remodeling is promoted by an acellular matrix in a muscle-specific spinal muscular atrophy mouse model

Hanneke IJsselstijn, Rotterdam, the Netherlands  
Structured follow up; does it help the individual patient?

Daphne Mous: Gentle ventilation in congenital diaphragmatic hernia patients: Long-term pulmonary outcome

Laura Valfre: Surgical outcomes in congenital diaphragmatic hernia survivors: Long term-follow up

Laura Valfre: Patching the diaphragm affects orthopaedic outcome: A five years follow-up

Paul Losty: Outcomes following prosthetic patch repair in newborns with congenital diaphragmatic hernia – A single centre experience

Neil Patel: Sildenafil weaning post-discharge in congenital diaphragmatic hernia

Marlous Madderom, Rotterdam, the Netherlands
Congenital diaphragmatic hernia with(out) ECMO: impaired development at 8 years, the disease or therapy to blame?!

Julia Gunn: Two year neurodevelopmental outcome following
neonatal repair of congenital diaphragmatic hernia
Karin Zahn: Long-term results of ECMO therapy in neonates with congenital diaphragmatic hernia

Kirsten Lyons: The effects of a sustained flexed position in supine on a CDH infant displaying reduced spontaneous movements against gravity: a case report

Monique van der Cammen: Motor performance in children with congenital diaphragmatic hernia treated with neonatal extracorporeal membrane oxygenation; a nationwide evaluation

Daphne Mous: Congenital diaphragmatic hernia patients treated with ECMO are at risk for chronic malnutrition into childhood

Beth Haliburton: Energy intake in infants with congenital diaphragmatic hernia (CDH)

Meike Weidner: MR quantitative pulmonary perfusion imaging at 3.0 T of 2-year-old children after congenital diaphragmatic hernia repair

Marjolein Spoel: 3He MRI in young adults with congenital diaphragmatic hernia: alveolar size differences between the IPSI- and contralateral lung
 


Also speaking is Onno Zwart, founder of En Stitching Hernia Diafragmatica, a Netherlands based CDH charity that was also founded in 1995.  Onno and his wife, Sigrid, have lost 3 cherubs to CDH and are long time members of CHERUBS.  In 2000, Onno visited the United States to attend CHERUBS first conference in Orlando (photo below), the first of many other CDH charity leaders we have welcomed to our events.  13 years later, Onno and Sigrid are hosting us for the CDH Workshop in Holland.

We are very grateful for this speaking opportunity and look forward to sharing information with CDH families, as well as our speech, when we return.

 CHERUBS 2000 CDH Conference

 Onno Zwart

  Onno and Dawn at Disney, 2000

(we will get better photo this year)

CDH Leaders in San Antonio, 2009

Combined Federal Campaign Charity

CHERUBS is now a member of the Combined Federal Campaign!

If you are, or you know someone, who is in the military or works for the U.S. government please choose CHERUBS as your charity of choice this October!

Our CFC number is 31232.


Did you know that CFC charities have to undergo a strict application process, including an independent audit and low overhead costs? This is another great way for our charity to raise money, raise funds and show the community that we are dedicated to being the best charity possible! We are very excited to be a part of the CFC and are currently the only CDH charity who is a member!!!

2013 so far for CHERUBS

2013 so far for CHERUBS:

* Senate Resolution for April 2013 as National CDH Awareness Month passed UNANIMOUSLY
* House of Resolution for April 2013 as National CDH Awareness Month currently in committee with new Co-Sponsors
* Capitol Hill visit for CDH Research Fund with plans underway!
* April 19th Marches and Events in Washington DC, Chicago, NYC, Seattle, Portland, Peoria, St Louis, Gainesville, Philadelphia, Denver, Phoenix, Las Vegas, the UK, Brazil
* Over $20,000 raised for CDH Research
* Over 12,000 Facebook Fans
* Over 4400 members
* Represented the CDH Community at the 2013 American Pediatric Surgical Association conference
* Represented CDH families at the 2013 DHREAMS meeting
* New FB app for our CDH Family Forums
* New members to our Medical Advisory Board
* MANY local events and fundraisers
* New weekly e-newsletter
* Dozens of TV and newspaper interviews
* 6 new videos
* New CDH Fundraising Kit
* Over 150 totebags sent out to new and expectant CDH families
* Nominated for a Health Advocacy Award and won several awards for being an outstanding non-profit organization
* We have visited many cherubs and families in the hospital and unfortunately gone to funerals as well. We are not just an "on-line support group", we are working hard to make a REAL difference not just in funding research and raising awareness but by being there for the families that need us.

Upcoming still for 2013:

* First ever joint International Medical & Family Conference this July in Boston with attendees from 5 countries so far
* Speaking at the CDH Community at the 2013 International CDH Study Group Conference in Holland in June
* 2 Scholarships for High School Seniors (Cherubs or siblings)
* MANY local get-togethers, picnics and fundraisers
* 2013 Stories of Cherubs Book featuring over 500 cherubs
* 2013 CDH Magazine
* New web site
* On-line CDH RESEARCH DATABASE!
* 2013 Masquerading Angels Ball in Raleigh in October
* 2013 CDH Research Raffle
* 2013 CDH Research Grant Facebook Contest
* UK CDH Ball
* UK Member Get-Together

And wait until you see what we're doing in 2014!!!

What is 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.

Like what we do? Please share this status!

Please donate to help us fund all of this and so much more! Donate via the tab on our FB page or at http://www.cdhdonations.org/

Contact Tracy about volunteering at volunteer@cherubs-cdh.org

Contact Melissa about holding a fundraiser at mlarrison@cherubs-cdh.org

Learn more about CHERUBS at http://www.savethcherubs.org/

U.S. House of Representatives Introduces Resolution for CDH Awareness Month

H. Res 144 that was introduced this week in the United States House of Representatives to make April, 2013 "National Congenital Diaphragmatic Hernia Awareness Month" by Rep. Martha Roby (R-AL) and co-sponsored by Rep. George Holding (R-NC).  

A companion bill was passed unanimously in the Senate on March 20, 2013 - S. Res. 85 which was sponsored by Senator Jeff Sessions (R-AL) and co-sponsored by Senator Ben Cardin (D-MD).

Congenital Diaphragmatic Hernia (CDH) affects 1600 babies a year in the United States, taking the lives of 800 children.  CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. The cause is unknown.  There is no awareness and very little research funding. 

MEET OUR BOARD - Dawn Torrence Williamson, President & Founder

Dawn Torrence Williamson Dawn is the mom of Shane Torrence (1/28/93-9/11/99). Shane was born with left-sided CDH, ASD, hypospadius, pulmonary sequestration, descended testes, and multiple other birth defects. Shane spent his first 10 months in the PICU at Duke University Medical Center and many more hospitalizations at the University of North Carolina at Chapel Hill. He had a trach for 3 years while he was on a ventilator for 2 years and oxygen for 2 and a half years. He also had a Mic-Key feeding tube, hearing aids, oral aversions, developmental delays and textile aversions. He suffered multiple complications including 6 CDH repairs, pulmonary hypertension, blindness for a year, hearing impairment, Cerebral Palsy, multiple blood infections and pneumonia and was lost to a very rare case of gastropleural fistula at age 6 and a half. Dawn is also the founder and President of CHERUBS.  Having volunteered for 16 years until she quit her job as a web designer and graphic artist to become CHERUBS first full-time employee in 2011.  Dawn works out of CHERUBS international headquarters in Wake Forest, North Carolina with 3 office volunteers; Shanon, Holly and Vicki. She is married to Craig, and they have 2 boys; 17-yr-old twins Braden and Garret. Going back to school to learn more about how to help our charity, she has a 4.0 in college while taking such courses as Biology, Anatomy, Medical Terminology, Business, Web Development, Public Speaking and more. She also is very active in her local community, belonging to several business and civic organizations as well as her local church.

Washington DC Parade of Cherubs on April 19th!

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

Washington DC Parade

• Meet with Senate Offices on April 18th
• Reception the evening of April 18th
• Parade on April 19th
• On Facebook - https://www.facebook.com/events/401677689912783/
• Register on Eventbrite - http://cdhawarenessday-2013washingtondc.eventbrite.com/
• Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
• 100% of money raised will go to the CDH Research Fund
• Contact Dawn Torrence Williamson with any questions about this event - events@cdhsupport.org