International Day of Congenital Diaphragmatic Hernia Awareness

April 17 is International Day of Congenital Diaphragmatic Hernia Awareness



Narrated by 7-yr-old cherub, Jessica Barry.

Governor of North Carolina Proclaims April 19, 2012 a Day of Congenital Diaphragmatic Hernia Awareness

The governor of North Carolina has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!!

Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade

Governor of Oklahoma Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness

The governor of Oklahoma has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!!

 Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade

Governor of New Mexico Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness

The governor of New Mexico has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!! WTG Green family for getting this done in honor of their cherub, Kylee Green!!!! ♥

 Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade

Governor of Illinois Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness

The Governor of Illinois has proclaimed April 19, 2012 as a Day of Congenital Diaphragmatic Hernia Awareness! Thank you to the Rubenstein family for requesting this proclamation in honor of their cherub, Aidan Rubenstein.  His father, Neil Rubenstein, is the Illinois State Representative for CHERUBS and is leading the Chicago Parade of Cherubs on April 19th!  We also have the Peoria Parade of Cherubs on April 22nd led by Kristin Aigner in memory of her brother.

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.   

Every patient diagnosed with CDH is different.  Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available.  There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

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.

CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness around the world.  

Learn more about CDH at http://www.cdhsupport.org

CDH and CHERUBS on CNN iReport!

Please read, recommend and repost as well as comment to help us convince CNN to make this national news!

Senator Sessions Works With Charity To Help Save 1600 Babies Born Each Year With Mysterious Birth Defect

http://ireport.cnn.com/docs/DOC-775825



PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

FOR IMMEDIATE RELEASE

Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com

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

Congressional Bill - http://www.cdhbills.org

“Surviving C47” by Lindsay Hales. A CDH Journey. All proceeds for April donated to CHERUBS!

from CDH mom and author, Lindsay Hales:

As April brings showers to make way for the beauty of spring, I’m reminded of my sweet CHERUB and her journey with CDH. Those early days in the NICU were much like the rains, dark and ominous. But through the heavy down pour came a light that has yet to be put out. My daughter’s story, as most Cherubs, brings hope and strength to those who suffer.

With Easter a week away, we are encouraged by our faith and reminded of God’s mercy and grace. To honor this season, and all our fighting Cherubs, I have decided to put on a fundraiser. Last year I published “Surviving C47”, a story of hope, faith, and a girl named Brooklyn. My goal was to share her struggles and raise awareness for CDH. For the month of April, all proceeds from this book will be given to the CHERUBS organization to help in these efforts. Books come in paperback, Nook, and Kindle formats and can be purchased at www.barnesandnoble.com or www.amazon.com.

Along with the book sales, I am also donating all of my profits from my Scentsy business. Scentsy is a flame-less candle system that uses electricity to heat scented wax. There are hundreds of warmers and dozens of scents to choose from. If you are interested in placing an order, please visit my website at www.lindseyhales.scentsy.us . There is no specific item you must buy, and anything you purchase will help raise funds for CDH.

As parents of CDH we refuse to be silent. We raise awareness so that one day we can say goodbye to this awful disease. We come together, strong and untied, for one goal. Just like our Cherubs, we fight, and embrace each story as it shapes the hearts of many.

Governor of Idaho Proclaims April 19th a day of Congenital Diaphragmatic Hernia Awareness

The governor of Idaho has proclaimed April 19th a day of Congenital Diaphragmatic Hernia Awareness!!!! WTG Forney family for getting this done in honor of their cherub, Sean Forney!!!! ♥

 Join us in the Virtual CDH Awareness Parade of Cherubs on April 19th at http://www.facebook.com/CherubsVirtualParade

PRESS RELEASE: Sessions to Address “Parade of Cherubs” in Washington to Raise Awareness for Congenital Diaphragmatic Hernia (CDH)

FOR IMMEDIATE RELEASE

Media Contact:
Kelly Maicon
919.741.9784
kelly@anuevents.com

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.

###

CHERUBS Dad Running In San Francisco Marathon to Raise CDH Awareness

Cherub Tate Napers featured in the above Save The Cherubs Facebook Timeline Cover

My wife (Karol Napers), kids (Lexie, Jake and Tate) and I will all be attending this year's conference in San Francisco.  When we heard about the conference being in San Francisco, I jokingly said to Karol 'wouldn't it be great if there was a marathon close to San Francisco around then?'  So we searched, and this one is right there in the city on the last day of the conference!  That was about as perfect timing as anything, a little miracle indeed. 

 

Just some history on my running, a couple of years ago I began running and quickly became addicted.  I ran my first marathon in Indianapolis in the fall of 2009.  Since then, I have made it a goal to be part of the '50-State Marathon Club' by running a marathon in each of the 50 states.  I have now completed a marathon in six states (Indiana, Tennessee, Ohio, Florida, Michigan, and New York).  Later this month, I'll be running the Louisville Marathon in Kentucky and then the San Francisco Marathon will be my eighth. 

 

We were introduced to CDH just a few months ago, when our son, Tate, was born.  We found out the day before he was born that he had a left side diaphragmatic hernia.  He was immediately placed on a ventilator after birth, and had a surgical repair when he was 6 days old.  A patch had been placed on his diaphragm.  He has done ver well (he's our little miracle baby!), and was able to come home just shy of a month after birth. 

 

When Tate was born with CDH, I always wanted to find a way to weave my running into helping raise awareness for CDH somehow.  We talked about starting our own race or fundraising in someway.  When I signed up for the San Francisco Marathon, the organizers where partnering with Crowdrise - a volunteer organization that helps with online fundraisers for charity.  I signed up to create a "Run For CHERUBS" fundraiser and tied it to the San Francisco Marathon Charities.  Below is a direct link to the Run For CHERUBS website, where you can find all the info.  This is also where you can go to donate by clicking on the orange "Donate" button.  My goal is to raise $2,500.00 for CHERUBS, and we're nearly a quarter of the way there already!             

 

http://www.crowdrise.com/runforcherubs

 

Also, I have included a link below to the overall San Francisco Marathon Crowdrise page.  You can see from there that the Run For CHERUBS fundraiser is among the top so far, in fourth place out of about 40 charity fundraisers.  It's pretty exciting stuff!

 

http://www.crowdrise.com/SFMarathon2012/event/1/1-100#teams

 

Thank you very much for helping to get the word out about this effort!  It's very appreciated!

 

Thanks!

Dan