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Thread: 2013 Joint CDH Medical and Family Conference

  1. 01-01-2013, 01:01 PM #1
    Dawn Torrence Ireland
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    2013 Joint CDH Medical and Family Conference

    Registration and more information at http://www.cdhconference.org

    Join us in Boston, Massachusetts for the first ever joint Medical and Family conference for CDH!

    Hosted by CHERUBS, Massachusetts General CDH Study Lab and Boston Children's / Harvard University.

    The Inn at Longwood Medical
    342 Longwood Avenue
    Boston, MA 02115

    Stay tuned for details!

    *************************************************

    Tentative Itinerary:


    ~~ Family Conference ~~

    Wednesday, July 10th - Pizza Party/ Dinner
    * Family Introductions
    * Parade of Cherubs

    Thursday, July 11th - Research Day
    * Medical Speakers
    * Medical Q&A Panel
    * Free Genetic Testing
    * CDH Lab & Clinic Tours

    Friday, July 12th - Awareness Day
    * CDH Research Bill
    * April 19th
    * Volunteering
    * Fundraisers

    Saturday, July 13 - Support Day
    * Round Table Discussions
    * Kids CDH Song Performance
    * Family Conference Conclusion



    ~~ Medical Conference ~~

    Tuesday, July 9th - Research Presentations
    Poster Presentations & Display
    Vendors

    Wednesday, July 10th - Round Tables / Panels
    Evening Pizza Party at Parent Conference
    Parade of Cherubs
    CDH Research Bill
    Vendors

    Thursday, July 11th - Medical Speakers at Parent Conference
    Medical Panel at Parent Conference
    Vendors
    Medical Conference Conclusion

    *** parents will not be allowed at the Medical Conference. It is strictly medical researchers and staff only. Please hold all questions for the Medical Forum and Presentations at the Family Conference.

    HOTEL INFO:

    Here is the booking instructions for the CHERUBS conference in July. Please get the word out, we have 40 rooms available and they should sell out that weekend.

    The Inn at Longwood Medical
    342 Longwood Avenue
    Boston, MA 02115

    We have a limited number of rooms so please book early if you plan to attend. Please call the hotel directly at (617) 731-4700 and ask for the CHERUBS rate of $189 on July 10-13th before the cutoff date of June 1st, 2013. Any bookings made after June 1st will be subject to the hotels prevailing rate (Average rate for those dates on 12-20-2012 is $28. Rooms may be cancelled without penalty up to 72 hours prior to arrival.
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  2. 01-01-2013, 01:50 PM #2
    KarenMyers
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    Can\'t wait!
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  3. 01-01-2013, 04:19 PM #3
    ClairMaher
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    see you all in July Boston here we come
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  4. 01-01-2013, 05:44 PM #4
    Chris and TracyMeats
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    If you have not had a chance to ever attend one of the CDH conferences, please try!!! You learn so much, meet wonderful people and lifelong friends and overall is a wonderful experience.

    This conference sounds amazing!!
    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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  5. 03-12-2013, 02:16 PM #5
    Chris and TracyMeats
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    http://2013cdhconference.eventbrite.com/#

    Please register at the above link, if you are planning on attending the conference in Boston this year!!
    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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  6. 03-12-2013, 04:10 PM #6
    Dawn Torrence Ireland
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    Thank you, Tracy!
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  7. 03-13-2013, 12:20 PM #7
    freedom
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    Thank you so much for all your hard work on getting this set up. The Green family is still trying to figure out how to make it happen for our family of 6. Keeping my fingers crossed. I've always wanted to go to one of these events.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )
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  8. 03-13-2013, 03:56 PM #8
    KarenMyers
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    I am registered!!!
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