Stay Connected 
You can do both, but many are sending them to the DC offices and calling local offices. Many times, it is just their aides getting most of the mail and answering calls in the local offices. Feel free to email them too with your letter, for some of our members are getting quick responses!
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
Thanks Tracy....Casey and I were putting a list of addresses together and I used the DC office, then thought maybe I was doing it the lazy way so wanted to be sure I was doing the right thing.
I've sent some via snail mail and some e-mail. So far I have not heard anything back. The min. I do I will mail them right to CHERUBS for you to have on file. I'm also posting this note from Josh. Thank you Josh. I wrote to them and sent e-mails. Here is the info for those of you who would like to write to them as well.
Josh Ogden Spencer Hensley
In addition to my last post, I have a new approach. Let's also send letters to NIH Director Dr. Francis S. Collins asking for his support.
Dr. Francis S. Collins, Director, NIH
9000 Rockville Pike
MSC 0148
Bethesda, Maryland 20892
Or e-mail him:
execsec1@od.nih.gov
And let's also e-mail the COPR, Director's Council of Public Representatives whose mission statement is to bring a public voice to NIH:
copr1@palladianpartners.com
If we put as much effort into contacting these people, maybe we can get them to let the Senate know they support us too!
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 )
I sent Letters to both CA Senators and my district Congressman. Working on the letters to the Committee. Haven't received any response back yet. When I do I'll make sure to pass on.
Good Luck everyone!!
Send letters to both State offices and DC Location. Also Call State Office and try to get a meet and greet set up to hand over the bill and letter personally. Lets Get this Bill Passed!!! Good Job everyone, one thing you may not think of..... Get your friends, co-workers, etc to write letters too! They are also a part of your CDH journey, let them write letters explaining the effect CDH had on the person they are close to!! Post the bill in local Supermarkets, Take the Bill to a College near you, ask if you can post on their boards, Take the Bill to Your OB's office, Call your Papers and tell them of this amazing opportunity we have to help CDH kiddos ALL OVER THE WORLD!! WE CAN DO THIS!!
My name is Christina, I am Mother to 4 children. My 3rd child, Hunter was born, full term and survived LCDH(Left Sided Congenital Diaphragmatic Hernia), ECMO (extracorporeal membrane oxygenation Initial replacement of missing diaphragm with synthetic patch,Breathing Machines,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 eating by G-Tube and Physical, Occupational and Feeding Therapy Daily.Through all of this, he looks at me and brightens every room with his smile! Overall,Hunter spent 45 days in NICU,several other hospital stays and approximately 10 surgeries.He has 2 Big Sisters,Danielle 20 (Dating a CDH Survivor),Codee 16,and a baby Brother,Hayden 2. Hunter's condition,in a weird way, has made us stronger as a family and has taught us lessons we will never forget! 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.
Christina Smith-Stembler
Washington State CHERUBS Rep/ Oregon CHERUBS Co-Rep/ Mother to Hunter, LCDH Survivor
washington@cherubs-cdh.org
www.cdhsupport.org
425-922-2828
www.babyhomepages.net/stembler
https://www.facebook.com/#!/christina.s.stembler
When is the letter deadline??
My name is Christina, I am Mother to 4 children. My 3rd child, Hunter was born, full term and survived LCDH(Left Sided Congenital Diaphragmatic Hernia), ECMO (extracorporeal membrane oxygenation Initial replacement of missing diaphragm with synthetic patch,Breathing Machines,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 eating by G-Tube and Physical, Occupational and Feeding Therapy Daily.Through all of this, he looks at me and brightens every room with his smile! Overall,Hunter spent 45 days in NICU,several other hospital stays and approximately 10 surgeries.He has 2 Big Sisters,Danielle 20 (Dating a CDH Survivor),Codee 16,and a baby Brother,Hayden 2. Hunter's condition,in a weird way, has made us stronger as a family and has taught us lessons we will never forget! 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.
Christina Smith-Stembler
Washington State CHERUBS Rep/ Oregon CHERUBS Co-Rep/ Mother to Hunter, LCDH Survivor
washington@cherubs-cdh.org
www.cdhsupport.org
425-922-2828
www.babyhomepages.net/stembler
https://www.facebook.com/#!/christina.s.stembler
My daughter (Gavin's mom) is sending her letters this week, too. It is so weird to think that I only learned about CDH 4 weeks ago today when Gavin had his surgery and now I know enough to write to our members of congress. It does feel good to do something concrete, though.
Grandmother to Gavin, born May 3, 2012; diagnosed with CDH and intestinal malrotation on July 20.
Thank you to all who have written letters. yeah!!! each one helps. This is just a friendly reminder. Here is all the info you need below.
http://www.cdhbills.org/
All letters, the Bill, tracker, info, video and everything related to the CDH Research Bill in one place!
Many, many thanks! Have a great week everyone.
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 (
I'm not sure on the deadline date Christina. I thought someone told me Oct. but I have not heard of a firm cut off date. I'll ask around some more.
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 (
I got my letters sent out last week.I am anxiously awaiting responses.
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.
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