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Thread: CHERUBS CDH Research Site

  1. #1

    CHERUBS CDH Research Site

    Our research site programming starts in August. I am so excited about that, maybe even more excited than I am about the events. I love that so much support and information is at CHERUBS... 13 years of doing that, we're pretty good at it! But no one is really doing the research on CDH that needs to be done. And no one has the database that CHERUBS has. Finally all this data will be used to actually make a real difference in the fight against CDH. We will be doing something proactive against CDH. Raising awareness is wonderful - the end result should be more attention to CDH and in turn, more research. We're going straight to research. Many doctors and hospitals will be working with us, the CDH Study Group and CHERUBS have been working together for years - we're taking it to a whole new level. All CDH families will be able to participate. We can all work together to find the cause and prevention and best treatment of CDH.

    This is the first step to the end of CDH. I get goosebumps thinking about that.

    This is the first step to the end of CDH.
    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.

  2. #2
    That is great news!! I am so excited for the research site programming to begin in August!! Working together to find the cause and prevention would be a blessing to end this devasting birth defect. Looking forward to participating in any way I can. LETS MAKE A DIFFERENCE IN THE FIGHT AGAINST CDH.
    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

  3. #3
    That's fantastic news Dawn!
    Maryanne (mum to Rebecca born 11/11/02 with LCDH)

  4. #4
    Very, very exciting news....
    Sharon - mum to Liam - 30/04/03 RCDH- 2 CDH repairs- Vent: 22 days- oxygen: 315 days- ectopic right kidney- NG Tube: 3 years & 7 months Chelsea-Rose - 08/03/99 Co-Rep for Australia - sknott@cherubs-cdh.org http://i281.photobucket.com/albums/k...nLiamsmall.jpg

  5. #5
    What wonderful news....
    Danielle - Lily's mum. Lily 31.07.07- Diagnosed at Birth - LCDH- Repair: 13 hours old- Ventilator: 5 days- NG tube: 7 days- Hospital: 16 days. Also mum to Ethan 21/06/05 http://i256.photobucket.com/albums/h...nLilysmall.jpg

  6. #6
    All thanks to you Dawn I am excited to see it, can't wait!!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  7. #7
    SO EXCITING!!!!

  8. #8
    Yes, it is all thanks to you Dawn!! I'm so excited, I can't wait. This is awesome.
    Donna Easley mother of Alexander born 9-28-06 with RCDH ECMO 9 days- ASD- chronic lung disease- pulmonary hypertension- tracheomalacia- reflux- nissen- g-tube- trach and home vent since 6/2007 overall a happy and rotten 2 year old and little brother to Walker (5) http://www.totsites.com/tot/alexeasley http://webpages.charter.net/jtejctn/cdhsmall.jpeg

  9. #9
    this is so wonderful!! I cant wait to see it
    Mommy to Haylee 01/26/2004 and My cherub Asher 07/04/2007- LCDH discovered at 18 weeks- medical termination at 24 weeks. Hypoplastic left lung and right jaw- pulmonary hypertension- Secundum type ASD- left liver lobe- stomach- appendix- and small bowel herniated www.freewebs.com/babyasher Ashers webpage http://www.youtube.com/watch?v=dxS8F4dkHjE Ashers video montage

  10. #10
    How WONDERFUL this truly is.
    WONDERFUL.....WONDERFUL....WONDERFUL!
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

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