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Thread: Happy Holidays from your CDH family at CHERUBS!

  1. #1

    Happy Holidays from your CDH family at CHERUBS!

    Happy Holidays from your CDH family at CHERUBS!

    2013 has been an incredible year at our charity. We held CDH Awareness parades and events in 12 major cities. We gathered proclamations declaring April 19th a day for Congenital Diaphragmatic Hernia Awareness from 32 governors and 18 mayors. Buildings around the world were lit up for CDH Awareness including the CN Tower in Toronto, Miami Tower and Dublin City Hall. The United States Senate unanimously passed a resolution to make April Congenital Diaphragmatic Hernia Awareness Month. We marched on Capitol Hill. We held a very successful joint medical and family conference in Boston and participated in 4 other medical events and conferences. We held 11 state get-togethers for families and several overseas. We awarded 2 college scholarships. We assisted many families financially. We brought on dozens of new volunteers and installed a new CHERUBS Parent Advisory Board. We again broke our fundraising record for the 5th year in a row. We gave over $40,000 in CDH Research Grants. We won the EmeriCon Giving Campaign. Over 50 fundraisers and events were held by families and friends that raised CDH awareness including participation in the NYC and Baltimore marathons. We've been involved in or mentioned in dozens of newspaper articles and television news reports. Our average daily social media posts raise awareness to over 25,000 people. Our web site was revamped and a new logo was created. We hosted medical experts as guest speakers on our forums. We entered the government's Combined Federal Campaign for the first time. We are founding partners in the new Alliance of Congenital Diaphragmatic Hernia Organizations. For the 3rd straight year we are listed as a 5-Star Top Non-Profit by Guidestar and GreatNonprofits.

    We accomplished all of this and much more thanks to the combined efforts of you - our members, donors, volunteers and supporters! Thank you for your continued support and generosity to our charity and helping families affected by Congenital Diaphragmatic Hernia.

    We look forward to continuing to serve the CDH community and reaching new and higher goals in 2014. Happy Holidays from our CHERUBS family to yours!

    Sincerely,
    CHERUBS Board of Directors
    CHERUBS Parent Advisory Board

  2. #2
    Amazing accomplishments! Thanks to all the amazing volunteers for all that you do!
    Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.

  3. #3
    Many, many thanks to each and everyone of our members for all your help this year. It takes everyone's help to get it all done. You all did awesome. Thank you!
    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 )

  4. #4
    Happy Holidays everyone! Enjoy!
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  5. #5
    It has been a FANTASTIC year made even more impressive by some additional challenges we have overcome with the strength of some INCREDIBLE volunteers & staff! Well done folks!

    Excited to see what 2014 will bring!!!

    Shelly
    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

  6. #6
    Happy Holidays everyone! Can't wait to see what 2014 brings.
    Felecia Marie Woodruff- CHERUBS Volunteer
    Pennsylvania State Representative, Awareness Committee Leader, Parent Advisory Board Member

    Daughter, Hayden, DOB October 8th, 2009. CHERUB SURVIVOR son, Bryson, DOB July 30th, 2012 born at The Children's Hospital of Philadelphia.
    21 Days ECMO, 6 Days Oscillator Ventilator, Day 32 CDH Surgery, Day 35 Got to hold him for the 1st time, 25 Days Conventional Ventilator plus 21 Days while on ECMO, 4 Days CPAP, 17 Days Nasal Cannulas, Day 90 Came Home from the NICU
    Bryson's Facebook page: www.facebook.com/brysonsbattleprayerpage
    My Facebook page: https://www.facebook.com/felecia.woodruff
    Email: fwoodruff@cherubs-cdh.org | awareness@cherubs-cdh.org

  7. #7
    For as great as 2013 was, 2014 will be better!! There is no stopping us!
    Father to Evie Nanette and Allyson Belle. Evie diagnosed with LCDH and passed away 14 hours after birth. Allyson diagnosed with LCDH- spent 4 months in NICU- 3 hernia repairs- on feeding tube and oxygen until she passed away at 15 months. CHERUBS Parent Advisory Board Member, Co-Volunteer Coordinator, and Utah State Representative.

  8. #8
    It's exciting to see what 2014 will bring!

  9. #9
    2013 was great! That's the year i got engaged and the year Emmalyn was born! It's a bit depressing knowing that she wasn't born this year, I feel like she's not a little baby anymore! **sigh**, maybe 2014 will bring us a new blessing

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