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Thread: April 19th Parade of Cherubs in Washington DC - International CDH Awareness Celebrati

  1. 02-29-2012, 12:58 PM #1
    Dawn Torrence Ireland
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    April 19th Parade of Cherubs in Washington DC - International CDH Awareness Celebrati

    CDH Awareness

    April 19th Parade of Cherubs in Washington DC

    International Congenital Diaphragmatic Hernia Awareness Daily Celebration

    Join us as we march in the Parade of Cherubs from the Lincoln Memorial to the Washington Monument to Capitol Hill where we will meet with Congress and raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill. Everyone is welcome to participate.

    REGISTER HERE - http://cdhawareness.eventbrite.com/

    When - Parade starts at 10:00 am at the Lincoln Memorial in Washington, DC on Thursday, April 19, 2012. On Friday, April 20th we will visit the White House.

    Where - a full parade route will be posted soon, as well as information on stops on the DC Metro so you can park and ride into DC.

    What - we will march 2.7 miles from the Lincoln Memorial to the Washington Monument, past the White House to Capitol Hill. At Capitol Hill, we will tour and meet with Senator Jefferson Sessions, sponsor of our CDH Research Bill. Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness.

    CDH AwarenessWho Can Participate - anyone who wants to raise CDH Awareness. You MUST register with us to participate! You MUST fill out a form (to be posted soon) before February 29th for us if you wish to tour the Capitol and White House with us.

    What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon. All children are encouraged to wear wings. Wings stand out better on bright colored clothes. Wear comfortable walking shoes! For the White House visit on Friday, please also wear CDH Awareness Gear!

    What Not to Wear - Anything trademarked or copywritten materials or phrases. No turquoise please.

    Wings - you can borrow wings at breakfast at the hotel at 8:00 on April 19th or purchase your own wings at http://www.savethecherubs.org

    Accomodations - we are currently working on hotel discounts. They will be posted by February 20th.

    Special thanks to Mandy Sroka Photography for being our official photographer for the even, Chic Events Productions for all their planning help and Alarm Security for sponsoring the wings!

    Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness!

    CDH Kids Song

    I'm a real live cherub but I don't have wings

    When I was a baby the doctor had to fix things

    My tummy was in my chest and it was hard to breathe

    He put it all back and here's where he fixed me!



    Congential Diaphragmatic Hernia Research Bill
    In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.
    Sponsor - Sen. Jefferson Sessions

    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!

    Event Registration Online for 2012 Parade of Cherubs in Washington DC

    Free Facebook Cover Banner:

    CDH Awareness

    CDH Awareness
    Order commemorative CDH Awareness Gear


    Feel free to download this shirt graphic to raise CDH Awareness:

    Congenital Diaphragmatic Hernia Awareness

    REGISTER HERE - http://cdhawareness.eventbrite.com/
    Attached Images Attached Images
    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

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  2. 03-01-2012, 11:09 PM #2
    NeilRubenstein
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    If you can't make it to the parade but want to show your support...now there's a way. Check out the CHERUBS Virtual Parade page to find out how you can participate!

    http://www.facebook.com/CherubsVirtualParade

    You can participate on Facebook, twitter, Google+, and Pinterest
    Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.
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  3. 03-02-2012, 12:30 AM #3
    TracyLanders
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    Dawn, this sounds like it's going to be great! I wish I could come down there and join but you all will be making such a difference that day! I can't wait to see pictures and videos.

    PS. I've heard the Cherubs' song before but to read the lyrics, then think "Ericka's about old enough to teach her that" got me a little teary-eyed. THANKS..you really have a way with doing that... LOL.

    Good luck with the parade!
    Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
    ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh
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  4. 03-10-2012, 05:51 PM #4
    Dawn Torrence Ireland
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    We will miss you in DC, Tracy! Hope to see you next year in Boston!
    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.
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  5. 03-10-2012, 05:53 PM #5
    Dawn Torrence Ireland
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    We now have over 225 people registered for the DC Parade of Cherubs!!!!! YEAH!!!!!!!!!!!!!!!
    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.
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  6. 03-10-2012, 05:53 PM #6
    Dawn Torrence Ireland
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    Register for the parade at http://cdhawareness.eventbrite.com/
    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.
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  7. 03-13-2012, 02:18 PM #7
    klunick
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    Is there a hotel that everyone is staying in DC? I live less than 2 hours from there and would like to meet up with certain people and let Dalton meet some other kids like him. I'm not interested in doing the parade but was wondering if there was some sort of meet-n-greet at a hotel that we could pop in for an hour or so.
    Dalton was born 3 weeks early. He wasn't diagnosed with a hernia until 10 days old when his lung collapsed and he turned blue. Dalton was air-lifted to Children's National Medical Center in Washington DC. He had his repair surgery at 12 days old and it was discovered that his spleen is located on the wrong side, his intestines are malrotated, and his appendix is higher up than it should be.

    Up-date... Dalton had his appendix removed on Nov 1, 2011 due to a rupture. It was later revealed that his intestines have rotated into the correct position and his spleen has migrated to the correct side. I guess time really does heal all wounds!!

    Dalton has an older brother, Connor (1/17/01) and loves to play soccer.
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  8. 03-13-2012, 06:16 PM #8
    Chris and TracyMeats
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    http://cdhawareness.eventbrite.com/ lists the hotels that CHERUBS has worked out rates with, but I haven't been following to closely to hear who will be staying and who will be driving in for the day.

    Here is the facebook link, post on the wall and see who will be attending and who is bringing their kids....https://www.facebook.com/#!/events/348096015213783/.
    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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  9. 03-14-2012, 08:52 AM #9
    klunick
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    Thanks Tracy. After posting, I realized that there was a link with all the info. Unfortunately, although I work in Alexandria, VA , Dalton has school and missing that is non-negotiable so no meet-n-greet.
    Dalton was born 3 weeks early. He wasn't diagnosed with a hernia until 10 days old when his lung collapsed and he turned blue. Dalton was air-lifted to Children's National Medical Center in Washington DC. He had his repair surgery at 12 days old and it was discovered that his spleen is located on the wrong side, his intestines are malrotated, and his appendix is higher up than it should be.

    Up-date... Dalton had his appendix removed on Nov 1, 2011 due to a rupture. It was later revealed that his intestines have rotated into the correct position and his spleen has migrated to the correct side. I guess time really does heal all wounds!!

    Dalton has an older brother, Connor (1/17/01) and loves to play soccer.
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  10. 04-19-2012, 04:54 PM #10
    Chris and TracyMeats
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    Hope the day was a success in raising awareness!!! Please share your pictures and details!
    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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