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This afternoon Senator Jeff Sessions formally introduced our $50 million Congenital Diaphragmatic Hernia Research Bill on the floor of the U.S. Senate!! At 03:58:04 of this video you can view Senator Jeff Sessions formally introduce the bill on the floor of the U.S. Senate.
History was made today!! Please go check out this amazing news!!! Thank you Senator Sessions!!
http://www.c-spanvideo.org/program/SenateSession5027
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
All the information on the CDH Research Bill can be found at the link below, including the Bill itself, Senator Sessions' video, link to the video and a letter template for EVERYONE TO PLEASE WRITE YOUR SENATORS AND ASK FOR SUPPORT OF SENATE BILL S.3396!
We need everyone's help to get this bill passed! Please write, share our stories, ask others to help. These babies lives literally depend on us right now to get them research funds! We cannot let this once in a lifetime opportunity pass us by. Please write and ask all CDH families and friends that you know to write as well!
http://www.cherubs-cdh.org/bills/
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
Ditto what Tracy said!!!! This is something that is so quick and easy and only costs the price of a stamp!
Please ask your Congressmen to support Senate Bill S.3396
Go here to track the progress of the Bill - http://www.govtrack.us/congress/bills/112/s3396
Look Up Your Congressmen To find his / her mailing address - http://www.house.gov/writerep/
Download Letter to Send To Your Senator / Congressman - http://www.cdhbills.org/letter-cdhresearch.doc
Include The CDH Research Bill and a photo of your cherub - http://www.gpo.gov/fdsys/pkg/BILLS-1...112s3396is.pdf
Sign the CDH Research Bill petition and ask others to sign as well! - http://www.change.org/petitions/to-i...agmatic-hernia
To do several of these things: Go to http://www.cdhbills.org/ and find your Senator's contact information. Call their offices, make an appt. At the least, you will speak to their health aide. Take a copy of the bill with you (also on the site). Take a photo of them and you and your cherub or your cherub's photo. Write up your cherub's story and how you are helping with this bill by asking for support. A one page story/press release. Then march into your local newspaper or TV station's office and ask to speak to a reporter. Tell them your story in person. Hand them the printed story (with your contact info) and your photo. You can use the letter template (on the site too) to help with the story paper if you need it. MOST IMPORTANT is talking to the Senator and/or Aide! We need their vote!!!!!! Then try the media. The worse the media can say is no.
Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.
Founder and President of CDH International.
Executive Director of:
CDH International USA
CDH International UK
CDH International Canada
CDH International Switzerland
CDH International Netherlands
CDH International Singapore
CDH International Hong Kong
Messages may be answered by CDHi Team.
The Green family will for sure be sending in our letters very soon. Loved the picture above. So cute. Great job.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH 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 . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (, Chloe ( 6 ) & Elodie ( 3 )
Working on trying to get in for a meeting with Sen Merkley from here in Oregon as he is on the committee we have to get it through. I already have several folks interested in going if we can get a time. Keep your fingers crossed!
Shelly Moore
CHERUBS Oregon Representative and Oregon Hospital Angel
CHERUBS Prayer Committee Member
CHERUBS Parental Advisory Board Member (2013-2015)
Email: oregon@cherubs-cdh.org
Facebook: http://www.facebook.com/Teckiemom
Grandmother to cherub angel Jayden, the only son to my born to youngest daughter, Alicia.
Jayden was diagnosed with CDH at his 17 week ultrasound with severe LCDH, stomach, intestines up as well as having polycystic kidneys. He was born February 19, 2010 at 36 weeks gestation.
Jayden spent 7 days on ECMO after which he was working on gaining strength for surgery when his polycystic kidneys started failing at about day 15, totally failing by day 19.
Jayden spent 4 days on dialysis before gaining his wings on March 14, 2010 at age 23 days.
Remembering Jayden - A Family's Journey in Coping with Loss to CDH
http://rememberingjayden.blogspot.com/
Jayden's CDH Story 2/19/10 - 3/14/10
http://www.youtube.com/watch?v=0fKsAsMS_ZA
How are those letters going? Senator Sessions has told us that the bill should go to vote before the elections - if we make it through the committee! So we need those letters going!!!!! Have you written yours yet? Need more info? http://www.cdhbills.org/ has all the info to get started and it's so EASY to do!!!!
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
Got my letters out today and helped my mom write hers!
Carrie- Mom to Catherine (December 3, 2008 ) and Christian- LCDH (January 31, 2006)
Christian was on VA-ECMO for 10 days, hernia repair and then started to bleed out and they had to go back in to stop bleeding (same night), in Shands hospital for 56 days, reherniated and had repair surgery in April 2009. We were in the hospital for a week for the repair surgery only because they were having difficulty getting bowel sounds.
Mine are all done. I've also sent in e-mails as well.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH 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 . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (
The Senate CDH Research Bill Still Needs Your Support!
Go to http://www.cdhbills.org for all informatin about Senate Bill S.3396!
PLEASE WRITE TO YOUR SENATORS AND SIGN THE CDH RESEARCH PETITION FOR Senate Bill S.3396 for Congenital Diaphragmatic Hernia Research!
Congential Diaphragmatic Hernia Research Bill
In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.
Sponsors - Sen. Jefferson Sessions (R-AL) and Sen. Ben Cardin (D-MD)
CDH affects 1600 babies in the United States every year, with a 50% mortality rate. It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth. The cause of Congenital Diaphragmatic Hernia is not known. There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida. More research funds are desperately needed and we are appealing to the United States government to help these babies.
Look Up Your Congressmen To find his / her mailing address
Download Letter to Send To Your Senator / Congressman
Include The CDH Research Bill and a photo of your cherub
Sign the CDH Research Bill petition and ask others to sign as well! Here is the link to the petition, http://www.change.org/petitions/in-s...HERUBS+Members
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
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