Meet Our New 2012 CHERUBS Parent Advisory Board!

In 2012, we are completely restructuring CHERUBS to go from a small "mom and pop" charity that offers mostly support services to families to a much, much larger, more professional non-profit organization that can fund larger projects, fund more research, raise more awareness and provide more services to families. One of the steps we are taking to do this is we have restructured our Board into 3 Boards;  Executive Board of Directors, Medical Advisory Board and Parent Advisory Board.  Meet Our New 2012 CHERUBS Parent Advisory Board!   The purpose of the Parent Advisory Board is to oversee all of our support services, help us to delegate responsibilities and fill volunteer positions, deal with member conflict, process new ideas, handle suggestions and complaints and be the professional "face" of CHERUBS in social media. This position has a 1 year term beginning annually on June 1st.  The first CPAB was appointed for 2012.  The first election will be held on May 1, 2013.  Members can serve up to 5 terms in a row if elected.  Members can run for reelection, nominate themselves or others, and it is up to each member whether or not to accept a nomination.  Our goal with elections is to keep active members on this Board and give the membership more of a say so in the leadership of our charity. All members of this Board will serve 1-5 years except for the Volunteer Coordinator, who will Co-Chair this Board for unlimited terms with a fellow 1-yr-term Co-Chair chosen annually by the Board of Directors.  The Co-Chairs are responsible for overseeing the duties of the Parent Advisory Board and Volunteers.  They will both report back to the Board of Directors quarterly. The Board of Directors will be the business end of CHERUBS.  The Parent Advisory Board will be the heart and soul of our CHERUBS team. This is a very important Board with very important roles that these members do not take lightly.  You can send your comments, questions, concerns and other correspondance to the new Parent Advisory Board at cpab@cherubs-cdh.org Welcome to our new 2012 CHERUBS Parent Advisory Board: Kara Hess, Parent Advisory Board Co-Chair Kara is mom to Adam, LCDH survivor born August 2006.  Other complications from his CDH include Gastric Volvulus (rare abnormal rotation of the stomach of more than 180° that creates a closed loop obstruction), Dysphagia, Hypospadius, reherniation, bowel obstruction, and malrotation of the intestinal tract.  Adam also has Apraxia, a neurological disorder that is characterized by the loss of ability to carry out learned movements,despite having the desire and physical ability to perform the movements.   Kara has been a member of CHERUBS since 2007 and has served on the CHERUBS Executive Board of Directors and Conference Planning Committee.  She is wife to Chuck and is a stay at home mother of two busy boys. Prior to motherhood, Kara worked as a Senior Contracts Specialist for a meeting and conference planning company.  She also worked as a Professional Development Assistant for a child care referral agency. Kara received her Associate of Applied Business degree from Stark State College. She enjoys Thai and Indian dining/cooking, biking, traveling, garage saling, daily coffee time with her mom, and leading a daily women's Bible devotional group.    Tracy Meats, Volunteer Coordinator Co-Chair Tracy is the mom of Ian Wesley, born April 3, 2004, at 36 weeks old.  He was born with an undiagnosed left-sided CDH.  He spent 53 days in the NICU at Primary Children's Medical Center in Salt Lake City, Utah.  Ian was on ECMO for 7 days and had his CDH repair on day 5.  On day 48, he had left and right inguinal hernia surgeries, along with an undescended left testicle surgery.   He was on a ventilator for 29 days, of which 23 days was an oscillating vent.  He endured many complications including pulmonary hypertension, NG tube feeds, developmental delays, minor oral aversions, hypoplastic left lung, chylothorax,  pneumothorax, anemia, acid reflux, and oxygen dependency.  Ian used oxygen for 546 days.  He currently has abnormal systemic venous drainage above the heart with numerous collateral vessels and an echogenic mass on the heart, all due to ECMO.  Ian loves school and his video games! Tracy is the Wyoming State Representative and Volunteer Coordinator for CHERUBS.  She is married to her loving husband, Chris, and they have 3 other sons besides Ian; Cole, Shane and Toby.  She is an Avon Representative and her full-time job is a stay-at-home mom.  Tracy has a BS in Accounting and has worked as an auditor and tax consultant.  She enjoys volunteering to help CDH families, reading, playing and listening to music, anything crafty, and fishing. Neil Rubenstein, Back-Up Co-Chair Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks.  Aidan had surgery to repair his hernia when he was 4 days old.  His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon).  Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days.  Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen While Amy and Neil were still dating, they started Creative Celebrations, a children party planning and entertainment company.  Neil has over 15 years experience in Integrated Marketing Communications. Nicolle Colvin Nicolle is the mom of Kasey Colvin 11.16.08-12.19.08. Kasey was born with undiagnosed left sided diaphragmatic hernia. Kasey fought for 33 days, he had severe chylothorax and his lymphatic system wasn’t functioning properly, so he grew his wings on December 19th. Nicolle is the Colorado State Representative for CHERUBS. She is married to her husband Kevin, they are also the proud parents of 2 year old Brooklyn. Nicolle enjoys working out and going to Bronco and Rockies games with her family. Freedom Green Freedom Green is the mom to Kylee Freedom Green.  Kylee was born October 4, 2000 and passed away on October 5. She was with us for 14 hours. We first learned about our daughters condition at our 18-week ultrasound.  She had Left-Sided Congenital Diaphragmatic Hernia – also known as CDH.   Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX.  Dr. Brian Kirshon of Houston Perinatal Associates performed an emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. She passed away peacefully in our arms.  I currently live in Owings Mills, MD with my family. I am married to the most loving and caring man; my husband Joseph Green. We have 4 wonderfully active children here with us today: Trey ( 9 ), Skyla ( 8 ), Chloe ( 6 ) and Elodie (3). I work full time as a stay at home mom.  I love long-distance running, reading, playing, traveling, cooking, and gardening; all with my family. I have been a member of CHERUBS since 2000.  I serve as a CHERUBS "on call" parent for grieving families.  I also work as part of the welcoming committee, and any other odd jobs which help CHERUBS.  I love helping CHERUBS.  It is amazing how much CHERUBS has grown over the years.  CHERUBS is by far the most comforting place we found on our journey down the CDH path. It makes me smile. Karla Holt Karla is the mom of Braden Holt, born March 13, 2008. Shortly after birth he was diagnosed with a right side congenital diaphragmatic hernia. He was transported via helicopter to the Children's Hospital of Philadelphia. Braden's condition remained stable and he was able to have his diaphragm repair surgery the day after his birth. He recovered quickly and was able to come home on his 12th day of life! To date, Braden has had two other minor procedures. At 13 months he required surgery for an undescended testicle (orchiopexy) and had ear tubes placed in both ears in July 2010. Thanks to a year of in home feeding therapy Braden is now eating us out of house and home! He is a happy and energetic four-year-old who spends his days practicing his ninja moves (karate) and terrorizing his big sister, Brooke (age 8). Karla lives with her family in Bucks County, Pennsylvania (Fountainville) and is the CHERUBS state representative for Pennsylvania, New Jersey, and Delaware. She teaches high school Spanish in the Abington School District and has studied in Seville, Spain. She also has a Master's degree in ESL. She loves running, swimming, and being outdoors with her family. Melissa Larrison My name is Melissa Larrison. I am a mom to 3 beautiful children. Jada who is nine, Kaia who is eight, and Hanna Rae Rose who is our CDH angel. I was diagnosed at nineteen weeks and went to OKC to deliver as it was close to family. Hanna’s defect was relatively small and easy to fix. Unfortunately her little body couldn’t get over other complications with her care and she passed away after twenty one days of fighting. I joined Cherubs in October of 2008 and the amount of support I have received is immeasurable. Cherubs has become part of my family and I am forever grateful for them. I now hold a board position on the parent board. I am the Fundraising Coordinator and the Virginia state representative. Please feel free to contact me for any of your Cherubs needs. Karen Myers Karen Myers, is the mother to Kaleigh Marie who was born on 30 July 2002. She was born at Wilford Hall Medical Center, in San Antonio TX, after learning at 20 weeks gestation she would be born with a left sided Congenital Diaphragmatic Hernia. She spent 10 days on ECMO and had her CDH repair on her 15th day of life. During her repair her spleen cracked and that had to be repaired as well. Unfortunatley she passed away when she was 17 days old, the pulmonary hypertension proved to be to much for her. I am also the mother to another angel, William Logan, who was stillborn on 27 May 2005, at 27 weeks gestation, due to non-immune hydrops fetalis. After much testing and genetics couseling it was deemed that there was no connection between the CDH and Hydrops we just got struck by 2 different lighting bolts. They are buried sde by side at the National Cemetary in Biloxi Mississippi where my husband and I will be layed to rest with them one day. I am also the mother to 3 other beautiful children. Alec, who will be 18 soon and off to college. Aubrey, who is 6 and loving the 1st grade and Jackson, who is 18 months and into everything. I also have a wonderful husband, Will, who is active duty Air Force and I am a stay at home mom. We currently reside in San Antonio Tx but move when the Military says so. I have been a member of CHERUBS since finding out about Kaleighs CDH and wouldn't be the somewhat sane person I am today with out all of the volunteers love and support over the years as well as all the wonderful parents I have met along the way who journey through this horrible defect together. Christina Smith-Stembler My name is Christina, I am Mother to 4 children. My 3rd child, Hunter was diagnosed with Left side CDH at 20 weeks gestation. Before the diagnosis, I was full of joy that I was having my first Son, after, I was full of worry. Hunter was born in 2008, full term with less than 10% chance of survival, and survived LCDH(Left Sided Congenital Diaphragmatic Hernia), 10 days on ECMO, Initial replacement of missing diaphragm with synthetic NeoPrene patch, Breathing Machines, pulmonary hypertension, Stroke, No Pericardial Sack, RSV, Repair to diaphragm Patch, Bowel Blockage, Bowel Reconstruction, Months of IV antibiotics, Lovenox Shots to dissolve blood clot in heart, Low Weight and Size, Still being fed by G-Tube, (WEEK OF APRIL 13TH, 2012 HUNTER TOOK HIS FIRST FOOD BY MOUTH) Physical, Occupational and Feeding Therapy Daily and through all of this, he looks at me and brightens every room with his smile, he has remained happy and strong, he has even taught me the meaning of the words miracle, strength and humility. Hunter is my hero and stronger in spirit than anyone I have ever known! He is now 4 years old and attends a preschool with other special needs children. He has come so far and I am so proud to be his Mother. Overall, Hunter spent 45 days in NICU, several other hospital stays and approximately 10 surgeries. He has 2 Big Sisters, Danielle 21 (Dating a CDH Survivor), Codee 17, and a baby Brother, Hayden 2. Hunter's condition, in a weird way, has made us stronger as a family (The Stembler Six Pack) and has taught us lessons we will never forget! He is the reason I became Washington State Rep and Oregon Co-Rep for CHERUBS. I wanted other families to know that there is someone here for them, someone that they can depend on and a little boy that can provide some light in the darkness of CDH. Chris Weaver I am a mother of 4, 1 angel born sleeping, 2 girls and one boy.  I am also a grandmother of 3, 2 grandsons and 1 granddaughter. Born and raised in Boston suburb and moved to West Michigan in 2007.  I have two grandchildren with rare diagnosis of genetic disorders.  Matteo who is 3 1/2 was diagnosed at birth with hirschsprungs disease, which affects the colon.  He had a repair surgery at 3 weeks old.  Nevaeh, my granddaughter, who is the reason I became a member of CHERUBS in 2009, was diagnosed at 17 weeks gestation with LCDH.  I count my blessings each day as I have been told that it is very rare to have 2 different genetic diseases in the same family as we have.  We are lucky that both children have had corrective surgery and at this time doing well.

2012 CDH Raffle for Research

Who's interested in winning $10,000 and raising $10,000 for Congenital Diaphragmatic Hernia Research? CHERUBS 2012 Summer Raffle for Research is underway! $20 per ticket in this 50/50 raffle.

Our goal is to sell 1000 tickets by October 15th with the drawing to be held during the CHERUBS Masquerading Angels Ball on October 20th!

The 3 people who sell the most tickets will each win 2 tickets to the Angel Ball! Make sure your name is included as "seller" in the purchase!

How Do I Buy A Ticket?

Purchase your ticket here through PayPal via Eventbrite or send us a check to CHERUBS at 3650 Rogers Rd #290, Wake Forest, NC 27587. Make sure to put "raffle" in the check memo!
By July 1st we will mail you a raffle ticket by postal mail with your ticket number.

The Drawing

The raffle drawing will take place on October 20th live at the CHERUBS Masquerading Angels Ball. It will be videotaped or skyped and posted via our Facebook page.

The Prize Money

The winner will receive 50% of total sales of the raffle tickets. Our goal is to sell 1000 tickets, which would equal to a $10,000 prize. If we sell under or over that number of tickets, the winner will still receive 50% of total sales of the raffle tickets - no more and no less.

CDH Research

The remaining 50% of the total sales of the raffle ticket will go into CHERUBS CDH Research Fund. Our goal is to award another $10,000 grant at the 2012 Masquerading Angels Ball. Last year we awarded $10,000 to the Massachusetts General Hospital CDH Genetic Clinic.

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.

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.

http://www.cdhsupport.org

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