Stay Connected

Page 1 of 2 1 2 LastLast
Results 1 to 10 of 16

Thread: CHERUBS 2010 Congenital Diaphragmatic Hernia Conference

  1. #1

    CHERUBS 2010 Congenital Diaphragmatic Hernia Conference

    CHERUBS 2010 Congenital Diaphragmatic Hernia Conference

    There has been a change in place and time!

    Due to the expense of holding a conference in San Francisco, the lack of volunteer support and the costs to families to stay in such an expensive city, we have decided to move this year's conference to Orlando, Florida. We had decided upon San Francisco over a year ago. We hoped the economy would've gotten better by this year but that hasn't been the case. Orlando is much more affordable at about half the cost to CHERUBS and to families attending.



    CHERUBS 2010 International Congenital Diaphragmatic Hernia Conference

    Orlando, Florida
    May 13 - 16, 2010



    We have also changed the dates and moved the event up to May. Our conference will coincide with the American Pediatric Surgical Conference and we will work closely with that group to offer CDH families and CDH researchers new services at this year's event. We will have amazing guest speakers as always but we will also include research displays by all the hospitals currently recruiting CDH families for research studies.


    We will offer discount Disney and Universal tickets as well. Our conference days are always half days so that families can fmilies have time to enjoy the location and all the attractions that it has to offer.


    Details to be posted very soon! Stay tuned to the conference site at http://www.cherubsconference.org
    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
    Oooooh!!! Now that might actually be doable!!
    Shana ~ Mom to Nyah-Lyn (05-31-2004) and Cherub Landon Matthew (06-20-200 Bilateral Diaphragmatic Eventration. Left side repaired @ 3 days old- Right side repaired @ 4 months old --> total hospital days = 42. He's our hero! http://i45.photobucket.com/albums/f8...bonSmall-3.jpg Landon's Journey: http://www.onetruemedia.com/shared?p...m_medium=email

  3. #3
    I am so bummed to see these changes....it does sound like it could be great to coincide with the American Pediatric Surgical Conference. I so wish it was in the summer months, for I can't pull the kids out of school to even think about going.
    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

  4. #4
    Yay Florida! I am going to try to go! Is it over a weekend?
    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!

  5. #5
    im much more excited about florida!!!
    Mom to Kailee Mae Glover Aug 27- 2007 and Gwendolynn Leigh Glover Feb 02-2009 to Feb 26- 2009 Right sided CDH 1 surgery liver failure on ECMO for 23 days dialisis off and onfor 24 days. <a>http://lagf.lilypie.com/STdbm6.png</a> www.caringbridge.org/visit/gwendolynnglover

  6. #6
    FYI for those of you who are considering going but are financially trying to afford to go:

    Many members are going without their families. They are looking for roommates to split the hotel costs. If you're interested in rooming, check out the posts here on CHERUBS forum. Please post any roomie questions in the private conference forums to be safe (this is the public one). http://www.cdhsupport.org/members/vi...?p=56521#56521

    Families of CDH Survivors - there are often state, local and federal grants that cover conference attendance costs for disabled children. Talk to your cherub's social worker, insurance agent, hospital social worker for information about your state! Some grants will cover lodging, gas and food. Apply NOW and not wait!
    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
    We went last year to the conference (San Antonio). We paid for the trip, but were reimbursed by the Oklahoma Developmental Disabilities Services Division.

    They did require that we do pay for a portion of the trip (we paid for hotel), but we were reimbursed for mileage/gas, food, etc... We did have a very thorough application to fill out, and there was an application deadline. They pay for parents to attend conferences every two years, so this year we will not qualify.

    The division provides this in hopes that parents will gain more information to benefit your disabled child. I am sure if Oklahoma has this service, many other states have similar programs through various state agencies. We would have never known about this service, if it were not for a friend who also has a disabled child! You definately have to do a lot of digging, to find various programs such as this but they are out there!

    Dawn.... do you know of any Federal programs?
    Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.

  8. #8
    I know a mom who used one for a Deaf / Blind conference years ago - trying to find more info on that.

    We had one for the same Deaf / Blind conference from the state - they paid for the hotel and conference fee. Shane's sight therapist took care of all the paperwork for us.
    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 trying to look up and book everything do you have an idea on hotel info yet?
    Mom to Kailee Mae Glover Aug 27- 2007 and Gwendolynn Leigh Glover Feb 02-2009 to Feb 26- 2009 Right sided CDH 1 surgery liver failure on ECMO for 23 days dialisis off and onfor 24 days. <a>http://lagf.lilypie.com/STdbm6.png</a> www.caringbridge.org/visit/gwendolynnglover

  10. #10
    Bummed it won't be in California, still thinking of going though!
    Melissa- mother of Kiyari Juliet born 7/06/2008- LCDH and big sister Daliah Jolie born 10/24/2006- 30 weeks premie. Vent- c-pap- nasal cannula. First surgery 10 days- on ECMO three weeks- second surgery at six months- Fundo- NJ- mickey button- cardio cath-lab at 8 months- spent nine months at Rady's Children Hospital NICU in San Diego-California. Came home on March 31st 2009 on nasal cannula- low flow- 100% oxygen and GT feedings- interested in food- but unable to swallow it. Cardio cath lab 3/2009- 8/20/09 and 2/9/10(Finally closed PDA)- 3/2/10 complication with pressures- 3/5/10 plug removed- PDA open again. Broviac 8/21/09- 12/3/09(came out- replaced)- 2/16/10(replaced again)- and 5/12/10 (repaired). Severe Pulmonary Hypertension- on Sildenifil- Bosentin- and Remodulin to treat it. Kiyari is a happy girl- loves to sing- dance and play peek-a-boo! Some language delays- but catching up!

Similar Threads

  1. Save the Cherubs Congenital Diaphragmatic Hernia Awareness C
    By Dawn Torrence Ireland in forum Save The Cherubs Campaign (Public)
    Replies: 0
    Last Post: 03-18-2010, 04:22 PM
  2. May 17, 2009 - Congenital Diaphragmatic Hernia Day
    By Dawn Torrence Ireland in forum News & Media (Public)
    Replies: 3
    Last Post: 05-17-2009, 08:42 PM
  3. CHERUBS - Congenital Diaphragmatic Hernia Organization
    By Dawn Torrence Ireland in forum News & Media (Public)
    Replies: 2
    Last Post: 11-29-2008, 11:12 AM
  4. Congenital Diaphragmatic Hernia Education
    By Dawn Torrence Ireland in forum News & Media (Public)
    Replies: 0
    Last Post: 09-02-2008, 02:17 AM
  5. Congenital Diaphragmatic Hernia Awareness - CHERUBS 1999
    By Dawn Torrence Ireland in forum News & Media (Public)
    Replies: 12
    Last Post: 01-08-2008, 09:38 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •