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Thread: CHERUBS Facebook Account

  1. #1

    CHERUBS Facebook Account

    My Facebook account has been disabled due to a complaint of "copyright violations" according to Facebook. What exactly that violation is, we do not know but are trying to find out and are trying to get the account enabled again.

    That account is very active with 1200 FB friends, linked to all of our FB groups, fan page, events, Cause, etc. It's very, very frustrating that someone is so callous to file a complaint like that against a charity who is raising a whole heck of a lot of awareness on Facebook! Our FB Cause alone has over 6000 people.

    I'm posting this because 2 members e-mailed this morning, upset because they thought I had removed from them as Facebook friends. This isn't the case at all and I didn't want any of the rest of you to think that either.

    We're working on this. Please say a prayer that this is resolved so that we can continue our work on that site.
    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
    I had a friend get banned temp for having too many friends... I hope it gets resolved soon!
    Nicolle Colvin Mommy to Kasey James 11.16.08-12.19.08 Colorado Representative colorado.cherubs@gmail.com http://cherubscolorado.blogspot.com/

  3. #3
    So sorry to hear that Dawn. I hope it gets solved soon.
    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

  4. #4
    wow, if it was someone who filed a complaint they must not have much of a life.....for you to work so hard to bring awareness and to support to others who have experienced CDH, this is a shame ...hope you will be back up soon
    Son Claude born with no diaphram- diagnoised in utero @ 20 weeks. passed away after 10 days. Celie diagnoised after birth- did high risk clinic ultra sound and saw complete diaphram @ approx. 28 weeks. Had Chambers who was a healthy baby inbetween Claude and Celie so saw no need to have another ultra sound. Celies repair at 3 days home in 1 month. Has one full lung and one quarter of the other. She will be 3 Nov. 21 and has no other complications. So I have been on both ends of the spectrum with CDH.

  5. #5
    Yikes, hope this gets sorted out quickly.
    Chris Tennyson Married to Matt 12 years Mom to Nicole- born 01/06/07 with LCDH- diagnosed in utero at 18 wks. Has g-tube- reflux- eosinophilic esophagitis (EE)- and scoliosis- but one happy and busy toddler! http://i296.photobucket.com/albums/m...s/IMG_5502.jpg

  6. #6
    I wondered what happened this morning...that is just not right. Hope it gets resolved soon.
    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

  7. #7
    Those of you on FB, would you mind posting something so that the other parents know what happened and don't think they were deleted! Maybe just comment

    "FYI - CHERUBS / Dawn's FB account was disabled due to a false copyright complaint. She's trying to fix the issue with FB but wanted you all to know she hasn't disappeared or deleted anyone as a FB friend. You can keep up with CHERUBS on our Fan page here on FB"

    It would be much appreciated... I've gotten 2 more members thinking I removed them.

    All this is such unnecessary juvenile drama. We could definitely be using this time to do more productive things.
    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.

  8. #8
    Dawn id like to be included as a friend on your Facebook when you eventually sort this drama out.
    Youd think people would have better things to do wouldnt you!

  9. #9
    Senior Member karahess's Avatar
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    Gotcha covered
    Kara- mom to Aaron (8-30-03) and Adam- LCDH (8-7-06). Gastric Volvulus at 7 months old; Borderline Chiari Malformation; reherniation- bowel blockage and intestional malrotation at 26 months old; Apraxia of Speech - neurological speech disorder; Auditory Processing Disorder; Asthma; and frequent headaches.

  10. #10
    Senior Member
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    Hope it gets sorted soon Dawn. Just another thing to add to your longgggg list of jobs. I don't know how you stay sane!!! Luv ya' xxx
    Danielle- mum of Alyssa 21-22/05/92 L-CDH diagnosed at birth

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