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Thread: April 19th - Celebrating CDH Awareness!

  1. #1

    April 19th - Celebrating CDH Awareness!

    **** YOU DON'T GO ANYWHERE ****

    April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY

    ♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in! ♥


    WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!

    Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.

    On April 19, 2010, after 2 years of a very unnecesary trial, led by 7 caring CDH organizations, 4 compassionate pro bono attorneys and 1000's of CDH families Congenital Diaphragmatic Hernia Awareness was restored to it's rightful owners - the babies, families and medical care providers affected by CDH. Now, ALL families affected by CDH can raise awareness freely without harrassment, threats of lawsuits and other negative behavior. Now, ANYONE can say and raise "Congenital Diaphragmatic Hernia Awareness" and help the babies!!!!!

    http://ttabvue.uspto.gov/ttabvue/v?p...&pty=CAN&eno=2

    On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.

    This is the only non-trademarked day specifically for CDH and we hope that you will join us and over 3600 members + 6000 supporters in this very important day!
    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
    What are some of the things that you all are doing on the 19th? I'm going to:

    - take CDH Awareness Ribbon cupcakes to the amazing lawyers who won the case for us pro bono to thank them.
    - newspaper interview
    - made 3 Change for CHERUBS coin jars to drop off at stores to collect change and raise awareness
    - releasing balloons
    - TONS of posting on-line to raise CDH awareness
    - sharing Shane's story
    - wearing CDH Awareness gear
    - Angel Ball committee meeting that night
    - lighting a candle when I get home in honor of all the cherubs

    Local families welcome to join me at the lawyer's office! I will supply wings for the cherubs!
    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.

  3. #3
    I'm thinking that sometime this week, I'm going to post some fliers all around my school. I have class on the 19th, and it's biology. So maybe I can talk to my professor about doing something quickly at the start of class. Ericka's also going to wear her CDH shirt, if it fits OK.

    GO CDH AWARENESS! Haha.
    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

  4. #4
    I have to get Braden a new shirt! My yearly dress down day at school got cancelled but I'm trying to get back on the schedule ASAP! We might be able to do it on the 20th as it's the day before spring break.
    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
    The 19th is Jayden's 14 month birthday so other then going to see him for his birthday I'm not sure what all I will feel up to doing. I ware my CDH bracelet everyday and when I go out I ware the awareness pins and I will ware them that day. I will post in my status about it and maybe ask others to as well. But right now I really don't know what I will do that day.
    Mother of Jayden Scott Gilbert, diagnosed with left side CDH at 17 weeks. In NICU for 23 days. Had multiple organ failure leading to his passing away. My Lil' Man, Mommy will ALWAYS love you!!!!!

    Hospital Angel Volunteer for Oregon & daughter of Oregon CHERUBS State Co-Rep, Shelly Moore

  6. #6
    All great ideas!!!!!
    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.

  7. #7
    I just got a shirt for Dakota and myself (Dakota's says CDH survivor and mine has the Cherubs logo on it - they look realy cute!) and I am going to have us wear them. I do try to talk about CDH whenever I can and spread the word.
    Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!

  8. #8
    Great! Can't wait to see photos!
    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.

  9. #9
    I am going to send out a mass email at work and I was wondering if it is ok if I use some of the pictures from Cherubs, such as the save the Cherub campaign and the instructional picture of CDH?
    My little Angel- Scarlett Ray Benitez was born July 19th 2008. She was born completely blue and not breathing at 38 weeks- she was 5 pounds and 12 ounces. She was diagnosed about an hour after birth with left sided CDH and she had a successful surgery two days later. The 19 days she was in the hospital are a blurr to me now. The doctors told us she did amazingly well for having CDH. She has acid refulx- severe asthma- and a few developmental delays and with all of that- to me and my husband she is perfect!! She is the happiest baby I have ever known (and no I am not biased ). Even when she is severly sick she still smiles. I thank God every day for giving me her!!

  10. #10
    I was also thinking of taking a picture of Ericka on Tuesday morning in her CDH survivor t-shirt and, hopefully, holding a poster that says "I am congenital diaphragmatic hernia awareness."
    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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