Sunday, October 16, 2011

Faces of Spina Bifida Video

This is a video put together by my friend Christy and I for a recent Spina Bifida Association of Colorado fundraiser.

http://www.youtube.com/watch?v=eKie0P46eJk&feature=share

3 comments:

  1. Hello Lisa,

    I wanted to stop by to let you know that on November 30th, 2011 at 7pm Dr. Marc Levitt, Director of The Cincinnati Colorectal Center for Children, will be holding an online Q & A relating to fecal incontinence due to Spina Bifida, as well as, explaining the Bowel Management Program he has designed to battle this difficult problem. The RSVP page is posted below if you are interested in logging on and attending and please feel free to contact me with any questions you may have concerning the event. Hope all is well and I hope you find this resource helpful on your journey!

    RSVP: http://www.eventbrite.com/event/2504065728

    Regards,

    John Martin
    Partner's Hub
    jmartin@dbaworldwide.com
    310-569-6858

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  2. Hi Lisa,

    I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

    Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

    I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

    Warmest regards and happy holidays,

    Courtney

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  3. Hey! We’re putting on an online live Q&A with Dr. Levitt from Cincinnati Children’s Hospital about fecal incontinence related to spina bifida, on February 22nd, 2012 at 7:00pm ET. If you’d like to participate in the event, you can RSVP here: http://www.eventbrite.com/event/2912706985. If you’re interested in hosting the event on your site or blog and would like some more info, please contact me, John Martin at john (at) partnershub.com. Thanks!

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