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CHERUBS 2009 International Member Conference
CHERUBS    |   Register To Attend   |    Join CHERUBS   |   Conference Hall & Hotel Info   |   Event Sponsors / Volunteers   |   Make A Donation   |  Purchase Event Items   |  Contact Us |

 
 
CHERUBS 2008 International Member Conference | Congenital Diaphragmatic Hernia Awareness Research and Support


Congenital Diaphragmatic Hernia Awareness and Support


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Alyssa Kessner - Congenital Diaphragmatic Hernia Awareness Ribbon

"I have found so much support, love, and many friends. I will be forever greatful to everyone at CHERUBS for helping me through the death of my daughter. Words could never describe the love I have in my heart for this organization." - Kate Crawford, mom of Shannon Crawford (1/16/07-1/19/07)

"CHERUBS is a place CDH families can go and talk about the many issues we deal with on a daily basis.   It is an extended family--that offers love, support and strength. No matter how CDH has affected each individual member.   We are a united family and CHERUBS gives you the peace in your heart to know you are not alone on this CDH journey. You have members all around the world that understand CDH.   We are all in this together.   Knowing I have members who can help me with each step we take with our daughter Shelby.   Makes this journey easier." - Stephanie Olivarez, mom of Shelby Olivarez (7/10/06)

"
My only wish is that I had found CHERUBS earlier. My son wasnt diagnosed until birth with CDH and after months of struggles I found CHERUBS and joined their family! Yes, it is a family, although each CHERUBS' journey is different, we all have the common bond of the helpless feelings and receive unconditional love and support from one another. THANK GOD FOR CHERUBS!" - Penny Campsey, mom of Cole Campsey (3/26/03)


"
My sister found CHERUBS for me right after Faith was diagnosed. I don't know what I would have done without all the love and support from these families around the world. Truly a community of courage, strength, love and understanding." - Amy Miles, mom of Faith Grace Miles (3/6/08-4/5/08)

"No one knows what this experience is like except someone who has really been there, and CHERUBS if just that- People all around the world who have seen the things we have, and felt the way we have, had to make the same decisions that we have. We all share the same goal now. Whether our children survived or not, we all want to see a day when there are more answers and more options." - Sarah Deskins, mom to Jeremiah Deskins (9/21/2007-1/12/2008)

"CHERUBS is important because of the awarness for research. I want to know WHY it was for our babies. Do we not deserve that? Parents with children with cancer or AIDS or Cystic Fybrosis or Spina bifida know what causes it. Parent with children born with CDH don't know why. I don't know why. I know it is not because I live in South Carolina because Shaz lives in Australia. I know it is not because I was 35 when Baer was born because Corin was 23 when Gabe was born. I know it was not because I was married because Tania had a partner in Darryl when Jacob was born. I know it is not because I was having a boy because Stephanie already had three girls when Shelby was born. I know it was not because I worked around chemicals in a engine factory because Amy was a teacher while expecting Faith. I know it was not beacause he was my fourth and I already had 3 perfect healthy children because Shannon was Kate's first and Jeremiah was Sarah's first. I know it was not because I had teenager's at home to help out with a sick baby because Kara had a toddler when she had Adam. I know it was not because it was 2007 and there wereso many pollutants in the air because Dawn had Shane in 1993. I know it was not because I did not have top notch prenatal care because Judi was in the military when Christopher was born. I know that it was not because I am not a christian because Penny prays to God everyday yet Cole was still born with CDH. I know that it is not because I am white because Juan Pablo and Fer are hispanic. I know that it is not because I am overweight because Danielle is and was thin when Alyssa was born. So now I know so many reasons why NOT, yet I and all the other CDH parents are still looking for WHY our babies where born with CHD. Until we have that answer we cannot begin to hope for a solution. This is why I think that CHERUBS is so important." - Lynne Brogdon, mom of Baer Brodgon (12/4/07)

"
Five and a half years ago, during my second pregnancy, my child was diagnosed with a Congenital Diaphragmatic Hernia (CDH). All I was told by my OB was that there was a hole in her diaphragm and that she would need surgery. I went home and searched congenital diaphragmatic hernia and I found CHERUBS. Almost everything I learned about CDH was due to CHERUBS. Through their website and their information packet I recieved in the mail. This information gave me guidance as to what to ask the doctors at and what I need to know about CDH. There also is a need for research. The fact that the medical community does not know what causes CDH shows there is a definite need for more research." - Kim Richards, mom to Olivia Raine Richards (8/31/02-9/19/02)


"CHERUBS is my new family, is the place I can go to cry or share or ask for prayers and there is always someone listening. CHERUBS is a place full of love, support and understanding. In CHERUBS I know I'm not alone and that my friends (because I have found so many wonderful friends) will always care for me and my family." - Fer Arce, mom to Juan Pablo Arce (1/6/07)

"When my son was diagnosed with CDH,during my pregnancy, I thought it was something simple that could be fixed with surgery once he was born. When he died I was so lost and alone, nobody really understood what CDH was even after I explained it over and over to them. Then I found CHERUBS and immediately I felt at home, everyone is there for me whenever I need them and most importantly I know I am not alone on my own journey of CDH, which makes all the difference!" - Kimberly Switzer, mom to Asher Switzer (7/4/07-7/4/07)

"I thought when Colton was first diagnosed it was a one time thing. He's fixed and we were sent on our way. I went to our follow up thinking this is a waste of money. (not that I wouldn't of gone). But then the Dr, came in and said he had bad news. I was so confussed. I immediatly went home a started doing research. And I found my new friends and now I have a better understanding of what is happening. Not all the answers I was looking for. But I do understand it's not my fault. and Thank you for that". - Carrie Crum, mom to Colton Crum (10/11/07)



McKenna Varen - Congenital Diaphragmatic Hernia Awareness Ribbon

CHERUBS 2009 International Member Conference
San Antonio, TX
July 23-25, 2009






The Holiday Inn Select San Antonio Airport
77 NE Loop 410
San Antonio, TX 78216
210-349-9900

http://www.hisairport.com



Tentatively, here's our schedule:



July 22, 2009 - Check In
July 22, 2009 6:00 pm to 9:00 pm - Pizza Party and Introductions
July 23, 2009 8:00 am to 12:00 noon - Conference
July 24, 2009 8:00 am to 12:00 noon - Conference
July 25, 2009 8:00 am to 12:00 noon - Conference
July 25, 2009 - Check Out

That gives everyone the afternoons & evenings to go play.


Our guest speakers this year are:


Pamela Lally, MD and Kevin Lally, MD (The University of Texas, Houston, TX) will discuss the International CDH Study Group

Meaghan Russell and Dr. Mauro Longoni (MassGeneral CDH Clinic, Boston, MA) will discuss Genetic Research Into CDH

Daryl Scott, MD and David Pearson, MD (Baylor College of Medicine, Houston, TX) will discuss "Genes for CDH: Arrays, Mice and Humans"

We  will be posting more information (driving directions, etc) soon.


CHERUBS Room Rate is $89.00
CHERUBS Room Rate + Breakfast for 2 adults is $97.00

Breakfast is not free with your room! I'm sorry, we tried, but this is the best we can do! Feel free to bring milk, cereal, etc if you want to save money! I think kid's do eat free in the dining room (per their site).

Rooms come with coffee makers, microwaves and mini fridges. There is a pool, restaurant, bar and fitness center. Free internet.

To receive the CHERUBS discount you *MUST* tell them you are CHERUBS members when you book the room and you must book it for July 22-25th or longer. We have to book 25 rooms to get our discounts and freebies so please, please, PLEASE stay at this hotel!!! It's definitely the best value around anyway!!! :)

I was planning on rooming myself with another mom but because we need to book those rooms I'm now booking my own room. I know several of you are rooming but please reconsider if you can afford it (we totally understand if you can't! We just want you to attend either way!).

We worked really hard to find a decent, safe hotel that was inexpensive and we hope we did ok. It's not glamorous but then, we didn't want our members paying $150 a night to stay on the Riverwalk. This hotel is near the airport and includes an airport shuttle and will also go anywhere in a 2 mile radius of the hotel (that's not including the Riverwalk or Sea World, but does include the malls).

They have been very generous to us and are allowing us a FREE suite for the kids during the conference and are only charging us a cleaning for the Meeting Room... that's saving us $1000's!!! So a huge thank you to the Holiday Inn Select!!!



There will be free babysitting during conference hours for the kids (volunteers needed!) and entertainment for them too (clown, magician, etc).

There is no conference fee, you just have to be a member of CHERUBS to attend!

You are responsible for your own lodging, food and other travel costs.

We are working on discount tickets for the local attractions. I have to say that the San Antonio Tourist Bureau has been AMAZING!!!! They will be sending all of our member info on the conference and San Antonio at no cost to CHERUBS!!! :)

So far it looks like there will be about 150 in attendance!!! We have members coming in from Australia, Mexico, Great Britain, Canada and Italy as well!!! This is truly a CHERUBS INTERNATIONAL Conference!!! :)

We hope to see you all there!!!



Please note that our CHERUBS Member Conference is open to members of CHERUBS only. 
If you would like to attend our events, please register to become a member.



Conference attendance is free to members, but members must cover their own personal costs (travel, lodging, food, etc).   


Please register to attend!












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Our Organization

CHERUBS is a 501(c)III organization located in North Carolina.   CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH).   As of April 2008, we have over 2250 members in all 50 states and 33 countries.  Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH.  We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.


What is CDH?

Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year).  The cause of CDH is not yet known.  The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale.  CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity.  This inhibits lung growth.     The cause is not yet known.

Roughly 50% of babies born with CDH do not survive.   Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems.  A few of the survivors suffer from severe long-term medical issues. 

CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.





Marco Pena - Congenital Diaphragmatic Hernia Awareness Ribbon



If you like the customized CDH Awareness ribbons and would like a free one for your cherub, please contact us at ribbons@cherubs-cdh.org with your child's photo, name and date(s)



CHERUBS 2008 International Member Conference | Congenital Diaphragmatic Hernia Support




CHERUBS   |   Register To Attend   |   Join CHERUBS   |   Conference Hall & Hotel Info   |   Event Sponsors / Volunteers   |   Make A Donation   |   Purchase Event Items   |  Contact Us   |  


DISCLAIMER:The information on all pages of this web site and at the conference is for education only. It is not meant to be used in place of proper medical care and advice. CHERUBS does not encourage or discourage any medical treatments or procedures. Our purpose is to educate families and medical care providers so that they may make the best decisions for the patients' interests. You can not compare your child to other children born with CDH, they are all different. The opinions aired by members are not necessarily the views of all members, staff, or of CHERUBS.



 
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