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Thread: 2014 CDH Research Grant - Please go VOTE!!

  1. 12-02-2014, 11:28 AM #1
    Chris and TracyMeats
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    2014 CDH Research Grant - Please go VOTE!!

    CDH RESEARCH GRANT VOTING CONTEST HAS BEGUN!!!!

    VOTE at http://woobox.com/ab54sc

    December 1st - 31st, 2014, CHERUBS is holding a voting contest to award a Congenital Diaphragmatic Hernia Research Grant via our Facebook page.

    1st Phase - Vote daily for your favorite CDH Research Center from December 1st to the 20th.

    2nd Phase - Vote counts are reset on December 20th and the top 5 CDH Centers will battle it out until NOON EST on December 31st.

    1 vote per day. Winner announced December 31st.

    VOTE at http://woobox.com/ab54sc

    Prize will be 50% of raffle tickets sold and donations to our CDH Research Fund! Currently we are at $2500 but are awaiting a full ticket count. Stay tuned!

    Purchase 50/50 raffle tickets at http://www.cherubs-cdh.org/awareness...146/category=0

    Donate to CDH Research at http://www.cherubs-cdh.org/awareness...tegory=6338081

    To vote you must be a page fan of CHERUBS - Congenital Diaphragmatic Hernia Research, Awareness and Support to participate. Your information will not be sold or shared. https://www.facebook.com/cdhsupport
    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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  2. 12-02-2014, 11:49 AM #2
    Chris and TracyMeats
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    Who are you voting for?


    Baylor College of Medicine CDH Genetic Lab (genetic research)
    Boston Children's Hospital CDH Clinic (repair material research)
    Cincinnati Children's Hospital and Medical Center (surgical repair)
    DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab (genetic research)
    Mass General CDH Genetic Research Study (genetic research)
    OSF St. Francis Medical Center (CDH Clinic)
    Shands at the University of Florida CDH Clinic (gentle ventilation research)
    St. Louis Fetal Care Institute (fetal research)
    Texas Children's Hospital (fetal research)
    The Center for Fetal Diagnosis and Treatment at CHOP (fetal research)
    UCSF Fetal Treatment Center (fetal research)
    International CDH Study Group (long term CDH care)
    Sydney Children’s Hospital (Australia)
    Universitätsklinikum Mannheim gGmbH (Germany)
    Université Paris Descartes (France)
    Ospedali Pediatrico Bambino Gesu (Italy)
    University Hospital Gasthuisberg (Belgium)
    The Hospital for Sick Children (Canada)
    National Center of Child Health and Development (Japan)
    Sophia Children’s Hospital (Netherlands)
    Liverpool University (United Kingdom)
    University of Oxford (United Kingdom)
    Scottish Congenital Diaphragmatic Hernia Clinical Network (Scotland)
    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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  3. 12-03-2014, 08:06 AM #3
    MonicaForquer
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    Hi Tracy! Is there somewhere I can read more about these research projects? Thanks!
    Monica- Mom of Sammy 8/20/14-9/1/14. Sammy is our first child. LCDH diagnosed at 19 weeks. ECMO, dialysis, EEG, two circuit changes for ECMO. Sammy was surrounded by family and knew he was loved. He looked exactly like my husband! Missing my little Sammy every day.
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  4. 12-03-2014, 04:05 PM #4
    Chris and TracyMeats
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    Very good question! I will see what I can find. The research going on at Baylor, DHREAMS, and Mass General are the 3 big genetic research trials going on and the easiest to find info. on. I have heard Baylor and Mass General talk, but DHREAMS has also attended CDH conferences and spoke on their research. The other ones listed are more hospital based research trials and more towards finding better treatments for CDH babies, whether it be ventilation, FETO, the repair material used, ect....

    I will ask if we have details on each project though.
    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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  5. 12-03-2014, 10:03 PM #5
    MonicaForquer
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    Thank you!
    Monica- Mom of Sammy 8/20/14-9/1/14. Sammy is our first child. LCDH diagnosed at 19 weeks. ECMO, dialysis, EEG, two circuit changes for ECMO. Sammy was surrounded by family and knew he was loved. He looked exactly like my husband! Missing my little Sammy every day.
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  6. 12-04-2014, 10:51 AM #6
    Chris and TracyMeats
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    It looks like we don't have much to read on each project. This is the 3rd year we have held this research contest and every year we get other hospitals that ask us to be included. After each hospital is the focus on where the money will be spent. If it is genetic research it is to find the cause of CDH. Surgical Repair is research into the type of materials used to fix the hole in the diaphragm to laproscopic procedures over the big incision to fix the repair. CDH Clinic is money spent on a CDH clinic at that one hospital. Fetal research is the ongoing research several hospitals are doing for the gel procedure and balloon procedure (tracheal occlusion). The International Study Group are focusing on long term care for people dealing with CDH. Gentle ventilation research is the treatment of CDH babies in the NICU. The international hospitals are listed for some of them have asked us to be included but most of their focus is for surgical repair or fetal research.

    The winners in the past have been in 2012 the $10,000 went to Mass General (genetic research). Last year CHOP won our contest (fetal research) and we had one family raise $10,000 alone and they picked DRHEAMS to receive the money (genetic research)....we felt since they raised that much money on their own, they could pick where the money was spent.
    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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  7. 12-22-2014, 09:28 PM #7
    Chris and TracyMeats
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    PHASE 2 of the 2014 CDH Research Grant Contest has begun!!!

    Vote daily at http://woobox.com/pw4mhq (NEW ADDRESS!)

    The Final Five:

    Boston Children's Hospital CDH Clinic
    Cincinnati Children's Hospital and Medical Center
    DHREAMS Research Study (Congenital Diaphragmatic Hernia) Lab
    The Center for Fetal Diagnosis and Treatment at CHOP
    Shands at the University of Florida

    Only the Top 5 made it to the final 10 day showdown!

    Right now, our grant prize is just $3600. To increase it, we need donations to our CDH Research Fund and to sell more CDH 50/50 Raffle Tickets.

    Make a donation - http://www.cherubs-cdh.org/awareness...tegory=6338081

    Purchase raffle tickets - http://www.cherubs-cdh.org/awareness...146/category=0

    Vote daily at http://woobox.com/pw4mhq (NEW ADDRESS!)

    Check out this video by a past CDH Research Grant recipient - http://youtu.be/i33CQIvGDvI
    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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