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Thread: Jorge Posada Foundation, anyone know about this!! GREAT!!!!

  1. #1
    We're on the other side!! dannlark is just starting out dannlark's Avatar
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    Thumbs up Jorge Posada Foundation, anyone know about this!! GREAT!!!!

    http://www.jorgeposada.com/html/jpf_about.html

    Wow, now that's AWESOME!!!!

    *Larkin

  2. #2
    Moderator craniomommynbaby is on a distinguished road craniomommynbaby's Avatar
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    It is pretty cool what they are doing. Max (son of Amy, Max's Mommy) met Jorge Posada. She posted pics on CAPPS a while back. Maybe she will see this and share again. :)
    Cindy
    *Skull bone removal surgery in summer of '77 for right unicoronal*
    Mommy to Simon
    *CVR w/ FOA surgery on June 29, 2005 for bicoronal*
    *CVR with bone graft and bone paste surgery on July 15, 2009 for bicoronal and defects*
    *Bone grafts and titanium plates on June 27, 2012 for defects*
    Soul Mate to Chris
    See our cranio journey at
    www.thescofieldfamily.com/craniosynostosis.html AND http://craniomommynbaby.blogspot.com

  3. #3
    three.little.boys has a spectacular aura about three.little.boys has a spectacular aura about three.little.boys's Avatar
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    I have known about this since Quintin was diagnosed. My friend here in town that has 2 sagital kids told me about it...yet she said they applied to get financial assistance (as the website states they want to help families of kids with cranio) Well....not only did they not help her, they never even got back to her. So, other than spreading the word about cranio, I'm not so shure what they are doing to help.

    Am I wrong?? Anyone have a good experience with them???
    [FONT=Arial Black]Sadie [/FONT
    Ethan 8-11-02
    Gabe 4-13-04
    Quintin 4-17-07 (metopic CVR/FOA 2/19/08)

    http://www.craniokids.org/support/showthread.php?t=2498


  4. #4
    Moderator craniomommynbaby is on a distinguished road craniomommynbaby's Avatar
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    From my understanding, they help kids overseas more than here.
    Cindy
    *Skull bone removal surgery in summer of '77 for right unicoronal*
    Mommy to Simon
    *CVR w/ FOA surgery on June 29, 2005 for bicoronal*
    *CVR with bone graft and bone paste surgery on July 15, 2009 for bicoronal and defects*
    *Bone grafts and titanium plates on June 27, 2012 for defects*
    Soul Mate to Chris
    See our cranio journey at
    www.thescofieldfamily.com/craniosynostosis.html AND http://craniomommynbaby.blogspot.com

  5. #5
    beccad will become famous soon enough beccad's Avatar
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    I contacted them about Annie and Timothy. I had completely forgotten about it and then one day out of the blue they call me. It was like two months ago that I emailed them. I gave Annie the lady's email and they have been talking back and forth. She sent them all of Timothy's information. I hopeful that they can help Annie.
    Becca:
    Mom to three wonderful kiddos:
    Noah is 8
    Elijah is 6
    Julianna is 3(Left Coronal Cranio)
    Vanderbilt Children's Hospital Nashville, TN
    Surgery April 15, 2008 (canceled because of a cold and fever)
    Surgery rescheduled June 26, 2008
    2nd surgery April 14, 2011
    WE ARE ON THE OTHER SIDE

    www.caringbridge.org/visit/juliannaharber
    www.harberclan.blogspot.com


  6. #6
    is happy happy happy! Wyatt's Mom has a spectacular aura about Wyatt's Mom has a spectacular aura about Wyatt's Mom's Avatar
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    Oh Becca, I really hope they help Annie and Timothy!!! Good for you for doing that. That is awesome!
    Sarah
    Proud mommy of:
    Logan - Jan '06 No Cranio
    Wyatt - April '07 Metopic & Sagittal - Surgery at BC Children's Hospital Feb 27th, 2008
    Cooper - Sept '09 currently have some concerns with his metopic suture, we've seen a neurosurgeon but are waiting and watching



    View Wyatt's Story: http://www.craniokids.org/support/showthread.php?t=2607

  7. #7
    We're on the other side!! dannlark is just starting out dannlark's Avatar
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    I really hope they can help. That would be great!

    *Larkin

  8. #8
    Lacey & Emma's Mommy EmmaLacey will become famous soon enough EmmaLacey's Avatar
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    Way to go Becca!! You Rock!!! I hope Timothy gets the help he deserves.
    Nancy
    Proud Mother to
    Lacey (8/18-2004)
    Emma (5/10-2007) Sagittal Surgery/and metopic - Dec 13, 2007
    CT Children's Medical Center - Dr Paul Kanev

  9. #9
    three.little.boys has a spectacular aura about three.little.boys has a spectacular aura about three.little.boys's Avatar
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    That is cool that they help overseas kids, but what about us Americans?? We really don't have $20,000 to pay the balance of Quintin's bills. What about normal hard working familys here in the states??

    I hope they can help Annie....she really deserves a break! Great job Becca!
    [FONT=Arial Black]Sadie [/FONT
    Ethan 8-11-02
    Gabe 4-13-04
    Quintin 4-17-07 (metopic CVR/FOA 2/19/08)

    http://www.craniokids.org/support/showthread.php?t=2498


  10. #10
    beccad will become famous soon enough beccad's Avatar
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    I know what you mean Sadie. I've been praying about this for the past few weeks. Annie has really been on my heart and I really want to help her out. I believe that Julianna has cranio for a reason and I found all of you for a reason. I feel like I need to start a charity or something to help with travel/surgery costs for families that can't afford them. I really don't know where to start but this has been on my heart for some time now. I have been talking to some people here in Memphis about some ideas for a fundraiser but it is kind of slow going right now. I want to really raise awareness and help people in the meantime. If anyone wants to help or has any ideas for me just pm me and we can talk. I will not be able to sleep until I do something. I love all you guys and together I'm sure we can all do something.
    Becca:
    Mom to three wonderful kiddos:
    Noah is 8
    Elijah is 6
    Julianna is 3(Left Coronal Cranio)
    Vanderbilt Children's Hospital Nashville, TN
    Surgery April 15, 2008 (canceled because of a cold and fever)
    Surgery rescheduled June 26, 2008
    2nd surgery April 14, 2011
    WE ARE ON THE OTHER SIDE

    www.caringbridge.org/visit/juliannaharber
    www.harberclan.blogspot.com


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