Baby Video Goes Viral Raising Awareness of CDH

Press Release:

March 31, 2010

"Parents group puts together video of photos of patients and heartfelt song to help raise awareness across the internet of a deadly and little-known birth defect."

Raleigh, NC - Within 24 hours the new video for "I'll Never Let You Go" by The Jammies featuring over 700 CDH patients has gone viral on YouTube with over 1200 hits in 1 day.   100's more people viewed the video on Facebook and blogs. 1200 hits in a day may not seem as impressive as the millions of hits as the video of the baby dancing to Beyonce's "Single Ladies", but for a group of parents desperate to raise awareness this is quite a feat. Never before has there been such a large collection of photos of these patients, such a huge group of families of these patients and such a passion to work together to raise CDH Awareness.

In this heart wrenching video, photos and information are put to music with a song written by the father of a CDH survivor. The song will soon be available on iTunes.com, with proceeds donated to CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It has also been adopted as the theme song of the "Save the Cherubs" CDH Awareness Campaign.

http://www.youtube.com/watch?v=vTChMLy2EFk

We are so proud of how much awareness this has bought to Congenital Diaphragmatic Hernia in just a day!   Created with photos submitted by families affected by CDH and put together by volunteers, this video has been propelled across cyberspace by families, friends and even strangers who heartstrings are pulled and who want to make a difference by raising more awareness.


Congenital Diaphragmatic Hernia

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive.  The cause is not known.  Over a half million babies have been born with CDH since 2000.  CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Arkansas TV News Station KTBS 3 - "Infant battles rare birth defect"

http://www.ktbs.com/news/infant-battles-rare-birth-defect/

Infant battles rare birth defect Play Video

By Chrissi Coile, KTBS 3 Health Reporter

Posted: Mar 29, 2010 9:15 PM
Updated: Mar 29, 2010 10:54 PM

 

Shelly and Kevin Poston have spent the past 6 months at Arkansas Childrens Hospital waiting to take their son Micah home.

He was born with a rare birth defect called Congenital Diaphragmatic Hernia or CDH. It occurs in about 1 in every 2,500 births. 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.

When Micha was born his lungs weren't developed so he had to be put on a machine to help him survive. Shelley says, "his heart was pushed to the right everything that was supposed to be in order was transverse and sideways."

At only 6 1/2 months old little Micah has already been through 5 surgeries.

The Poston's thought Micah was getting better until two weeks ago, they got a call from the hospital saying Micah had to go back on the ventilator to breathe.

Less than a week later Micah was taken off the ventilator and started eating through a tube.
The Poston's faith helps get them through these difficult times. Resting assured he'll be home soon.

Micah's having another surgery next week. He'll have a feeding tube put into his stomach.
The family hopes to bring him home soon afterwards.
To learn more about CDH click here.

Representing CHERUBS and CDH Awareness at the 2010 Durham, NC "Great Human Race"

 

On Saturday, March 27th, CHERUBS members participated in the Triangle's Great Human Race.  It is an annual 5k walk / run for local Raleigh - Durham non-profit organizations.   

We had about 20 people represent CHERUBS and raise CDH awareness in honor or in memory of their cherubs! We even had an expectant mom who is 6 months pregnant join in!   Families representing CHERUBS included Gene and Becky Hobbs in memory of Andrew Hobbs, Craig and Dawn Williamson in memory of Shane Torrence, and Kendrah Kidd and Chris Ward in honor of their cherub who is due this summer.  

We had fun and we raised money for a good cause.  The final numbers aren't in yet but we raised over $1200 in our first year in the event!!!!  Not bad for walkers who literally finished LAST in the walk!  :)

It was so wonderful to meet new families and spend time with old friends.  Just walking and talking and knowing you're not going down the path alone can make such a huge difference to a CDH family! 

It was a very successful event.  One that we hope to participate in every year.   A huge thank you to the family and friends of Andrew Hobbs for all their hard work and for bringing CHERUBS into this wonderful event!

 

On the way back from the race, Dawn got a chance to meet another CDH mom, Julie Younce, mom of CDH survivor Aaron!

New CDH Awareness Song and Video! "I'll Never Let You Go" by The Jammies

 

New CDH Awareness Song and Video!

http://www.youtube.com/watch?v=vTChMLy2EFk

"I'll Never Let You Go" by The Jammies

Available on iTunes soon. Proceeds donated to CHERUBS to help raise CDH Awareness

http://itunes.apple.com/us/artist/the-jammies/id289127263

Featuring 736 children and adults born with Congenital Diaphragmatic Hernia, affectionately known as "cherubs". Members of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support http://www.cdhsupport.org

The Jammies - http://www.thejammiesmusic.com/

CHERUBS - http://www.cdhsupport.org

Save the Cherubs CDH Awareness Campaign - http://www.savethecherubs.org

Congenital Diaphragmatic Hernia

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

CDH Awareness on Facebook, Myspace & Twitter on Tuesday... please participate

Dear CHERUBS members, Family and Friends who use Facebook, Myspace & Twitter:

We would sincerely appreciate it if you would help our cause by posting the following status update on tomorrow (Tuesday, March 23, 2010). Our goal is to raise awareness, catch the eye of the media and recruit family and friends to join in to help raise awareness also. If 500 people post and each have at least 50 friends, then that's 25,000 we can make aware of CDH in just 1 day!!!

But we need your help to do this. Please post the following to your Facebook, Myspace and Twitter status.  And your blog too please:

******

Please help raise CDH Awareness and help us to promote the new campaign by reposting this status update for Tuesday! Our goal is to get over 500 CDH families and friends to post! CDH affects a baby every 10 minutes. Over 600,000 babies since 2000 - killing 300,000. Please help us raise awareness and save the cherubs! http://www.savethecherubs.org

******

Please also recruit family and friends to join out Cause also. We have another big campaign going live this week and we will be using Cause.com for a huge part of it so the more members we have, the more we can do!

Thank you all so much for your help and your support of families affected by Congenital Diaphragmatic Hernia!

Save the Cherubs Congenital Diaphragmatic Hernia Awareness Campaign

Save the Cherubs
Congenital Diaphragmatic Hernia Awareness Campaign

http://www.savethecherubs.org

http://savethecdhcherubs.blogspot.com/

Cherubs are everywhere.  They are your next door neighbor's new baby.   The little girl on the swingset at the park.   The teenager that sits behind your son in high school geometry class.   The person behind you in the grocery store line.    Their scars are hidden under clothes, their stories a bit sad and taboo to talk about - so the miracles are not seen with the naked eye and you have probably mistaken a cherub for a "normal" person many times.   But they are there; walkling miracles with invisible wings.   And missing babies that belong to the grieving parents who you don't see grieve;  your local bank teller, the man who held a door for you at the gas station, the old woman who drove the car in front of you at the stop light this morning.   Cherubs are everywhere.

Unless you have been affected personally by CDH, you probably have never heard of it.   The mission of "Save the Cherubs" is to make Congenital Diaphragmatic Hernia a phrase everyone knows how to say and everyone knows what it means.  By raising awareness, we hope to raise research funds to save these babies - Save the Cherubs.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   Babies born with CDH often endure long hospitalizations and other complications such as pulmonary hypertension, infections, feeding issues, asthma and temporary developmental delay.    Some babies develop worse complications and sadly, 50% of babies born with CDH do not survive.    The cause of CDH is not known.

Cherubs are people who were born with Congenital Diaphragmatic Hernia, a severe and often fatal birth defect that occurs as often as Cystic Fibrosis and Spina Bifida.  Every 10 minutes a baby is born with CDH - adding up to over half a million babies since 2000.   Yet, CDH is given very little media attention, virtually no research money and until CHERUBS came along in 1995 there was no information and no support for families of babies diagnosed with CDH.   We have no national telethons, no large corporate sponsorships.   We have been struggling for years to bring attention to CDH and now, we are going to do so on a national level.

For 15 years, cherubs have been the awareness symbol of Congenital Diaphragmatic Hernia (CDH).   Through this project, families around the world are working with CHERUBS, photographers and the media to raise CDH awareness in a unique and striking photo and marketing campaign, which we hope will take your breath away and make you want to learn more about CDH and how you can help save these children.

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support  was founded in 1995 to give hope and information to families of children affected by Congenital Diaphragmatic Hernia (CDH).    We are a 501(c)III non-profit global CDH organization with members in 38 countries.    Run solely by volunteers and donations, CHERUBS strives to allow families to have free access to information materials, support services, awareness projects and to make a CDH connection with other families going through the same ordeal.  We are just a grassroots organization of families working hard to make a difference and trying to give Congenital Diaphragmatic Hernia Awareness wings to take flight.

CHERUBS is fighting hard to search for the cause, prevention and best treatments of CDH.   We invite you to help us to help these families and to help Save The Cherubs.

Media & Press Information for the "Save the Cherubs" Campaign

March 18, 2010 Press Release:

CONTACT:
Dawn Williamson *
awareness@cdhsupport.org
919.610.0129http://www.savethecherubs.org

New 'Save The Cherubs' Campaign Brings Awareness To Little Known Deadly Birth Defect That Has Affected Over Half A Million Babies In The Past Decade

After struggling since 1995 to bring more awareness to Congenital Diaphragmatic Hernia, a birth defect that affects 1600 babies each year in the U.S., CHERUBS announces a national CDH Awareness Campaign.

Raleigh, NC - CHERUBS, a grassroots non-profit organization created and run by parents of children born with a severe birth defect, is leading the way in raising Congenital Diaphragmatic Hernia Awareness through a new campaign called "Save the Cherubs"

Founded in 1995 by Dawn Williamson, CHERUBS is the world’s first and largest Congenital Diaphragmatic Hernia (CDH) organization with over 3000 members in 38 different countries and all 50 states.  Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Shane spent his first 10 months at Duke University Medical Center in Durham, North Carolina and endured many more hospitals both at Duke and at the University of North Carolina at Chapel Hill.  Immediately after Shane’s birth, Dawn searched for a support group, but there were none available.  After spending hundreds of hours in the hospital's medical library researching CDH and finding support only from parents she met at the hospital, Dawn felt a great need for a CDH support group.

“I wanted to create an organization to help those parents of children with CDH,” said Williamson. “I know exactly how it feels to be going through everything that they have to deal with and have no one to turn to, and I want them to know that CHERUBS is there for them every step of the way.”

CHERUBS serves the CDH community without charging parents or medical care providers for it’s services.  The amount of information and services that this group provides is staggering given that it receives no grant funding and has no paid employees. Fundraisers help to provide the services that CHERUBS offers, often on a shoe-string budget. Many charities are struggling during this economy and it is especially hard for smaller charities without marketing budgets to compete for media attention for awareness and for research funds.

CDH affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year and over 600,000 babies since the year 2000 - half of which do not survive. Some of the surviving babies, like Torrence’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, pulmonary hypertension or other long-term pulmonary problems.

There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH.   “Once a child come homes, it is not uncommon for a parent of a child with CDH to have to explain the birth defect to their pediatrician or general practitioner.  When the medical community is not that aware of something as common as CDH, it makes it almost impossible to raise public awareness but we are determined to change that."

CHERUBS is indeed determined.   In addition to all of their other services and projects, they have taken on a national campaign to catch the attention of the public.   In their new "Save the Cherubs" campaign, the charity is working with photographers and families around the country to capture these children and the affects of CDH on camera.

"The mission of 'Save the Cherubs' is to make Congenital Diaphragmatic Hernia a phrase everyone knows how to say and everyone knows the meaning of.  Our campaign is a media blitz using photos of the kids dressed as cherubs (street clothes with wings) in photos doing real life things to emphasize that these kids are real… they exist, they could be on the playground playing with your kids. They could be the children of the people you shop beside or the baby your neighbor lost but no one knows because there is no awareness!"

The charity seems to have no shortage of photographers and models and hope that the media and marketing worlds will join in as well.   "We are raising money to try to pay for billboard advertisements, magazine ads and newspaper ads.  Our members are all joining it to contact marketing companies to see if they will donate space to help raise awareness.   Local newspapers, television stations and magazines through the country are also joining in and covering our campaign photo shoots.  This truly is a group effort of CDH families, photographers, the media, marketing companies and CHERUBS and we really believe that through this campaign we will have the opportunity to inform millions of people about CDH.   It is a momentous event because this is the biggest CDH Awareness project ever created."

"By raising awareness, we hope to raise research funds to save these babies - Save the Cherubs."  said Williamson.  “There is still so much research that needs to be done and so many babies that need to be saved.”

"In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research. We will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found. We work toward saving babies in the future and honoring those we have already lost.   CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH so that more babies are lost to this birth defect.  To have more research funds, we need more awareness."

We plan to work on several projects this year including an educational video on Congenital Diaphragmatic Hernia that will be free to families and hospitals. We also just published a CDH Baby Book are working on two Congressional Bills and are in the midst of planning many events, including our CHERUBS Angel Ball in Durham in August and our 2010 International CDH Conference in San Francisco in July.   We are always so busy at CHERUBS and try so hard to bring more attention to this birth defect and more services to families”.

If you would like to join in on this campaign or make a donation to help further their efforts, you can reach CHERUBS through the campaign web site at http://www.savethecherubs.org


###

About CHERUBS

CHERUBS is an international charity located in North Carolina founded in 1995. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). CHERUBS has over 3000 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.

Congenital Diaphragmatic Hernia Forums - http://www.cdhforums.org

Over 100 different forums.  Over 3100 members.  Over 56,000 posts.

http://www.cdhforums.org

CHERUBS CDH Forums are the place to be for Congenital Diaphragmatic Hernia support and information.    Run by and for families affected by CDH, our forums are a 24 hours a day, 7 days a week source of support and friendship for our members.   Parents can learn what to expect while pregnant or learn about different issues and therapies.   100's of families have made friendships within our membership that will last lifetimes and some have taken friendships and information to forum their own groups and charities.  Nowhere else on earth can you find more compassionate, educated and determined CDH families than at CHERUBS where our only mission is to help those affected by Congenital Diaphragmatic Hernia.

Unlike social networking sites like MySpace and Facebook, our forums are 100% confidential.  You can relax and talk and be yourself and cry and vent - without worrying that family, friends or strangers are viewing.   Unlike listservs like Yahoo and Onelist, our forums are 100% safe.   There is no selling of your information, you will not start receiving spam junk mail. New memberships are indivually scanned and approved to keep drama off of our forums.   We provide a safe, comforting, drama-free environment for all CDH families.

With membership, CDH families also receive free on-line photo albums

and blogs to share their cherubs with the world. 

Join Our Forums  - membership is free!

Registration Agreement - there are a few rules everyone must follow to keep the forums safe

Only 5% of our forums are public so make sure to sign up to see all the great information and support! Membership is free. There is an approval process which can take up to 48 hours so make sure to fill out your form thoroughly to speed up the process. All information is 100% confidential and is not given or sold to anyone or any other group or business. We value our members' privacy and safety, which is why we verify each new member. Information on your membership form is also used for CDH Research so you not only get wonderful information and support but you help CDH research as well!

CHERUBS FORUM INDEX

All forums are private unless indicated (Public)

News &Events

• CHERUBS News (Public)
• In The Media (Public)
• CHERUBS Conferences & Get-Togethers - Private chit-chat between our members about event attendence plans
• Web Site News, Questions, Issues, Etc (Public)
  - Web site updates, issues, additions and general web site news.
• CHERUBS Conferences & Get-Togethers (Public)
  - National & International Member Conferences as well as State and Local Get-Togethers 

How You Can Help 

• Awareness Activities, Fundraisers, Angels for CHERUBS and more! (Public) -
  Yes, YOU can make a difference in the fight against CDH! Creative ways
  to volunteer, info on where donations are needed most, our Angels for
  CHERUBS Program and much more!
• Adopt A Hospital Program (Public) - Help CHERUBS to help CDH families by Adopting a Hospital in honor / memory of your cherub
• HOPE Totebag Program (Public) - Help families of babies affected by CDH by helping CHERUBS provide information and support items through our totebag project
• CHERUBS Member Input - Polls, helping us with printed materials, donation lists, new siblings, etc
 

Meet Our Cherubs

Stories of Cherubs (Public)

• Stories of Survivors (Public) - Stories of surviving CDH patients already printed in our newsletter,
  "The Silver Lining" and our book, "Stories of Cherubs" Please do not
  post your stories here (we'll post them for you after they are
  published) but please feel free to add updates to your stories or
  comment on other stories by using the Reply button on story post.
• Stories of Cherubs In Heaven (Public) - Stories of CDH patients lost that are already printed in our
  newsletter, "The Silver Lining" and our book, "Stories of Cherubs".
  Please do not post your stories here (we'll post them for you after
  they are published) but please feel free to add updates to your stories
  or comment on other stories by using the Reply button on story post.

Meet Other Parents

• Introductions - EVERYONE please introduce yourself & meet other parents here! This forum is now used to replace our old Main Listserv.
• Meet Other Parents Expecting Cherubs -
  Forum for parents Expecting CDH babies
• Meet Other Parents of Surviving Cherubs -
  Meet the families of other surviving cherubs
• Older CDH Survivors - Meet other adult survivors of Congenital Diaphragmatic Hernia
• Meet Other Grieving Parents -
  Forum for those who have lost their cherubs
• Parents Who Chose To Let Go Early -
  A judgement-free place for those that chose to terminate a CDH pregnancy
• Dad's Place -
  A place for dad's to talk about CDH or sports or whatever they want.
• Grandparent's Gathering -
  Grandparents have a double-dose of worry to deal with; worrying and
  sometimes grieving their cherubs and worrying and want to make it all
  ok for their children who are the parents of their cherubs. Here they can support each other and offer advice and info.
• Kid's Korner -
  Place for kids 10 and over to talk to other cherubs and siblings.
• Expecting Babies After CDH -
  Having children after having a child with CDH
• Trying To Conceive -
  Trying to have another baby after dealing with CDH (survivors & non-survivors)
• Marriage & Relationship Issues -
  Having and/or losing a very sick child can wreck havoc on even the
  strongest relationships. Here you can talk without judgement and
  hopefully gain some info and support to help .
• Inspirational Words -
  Inspirational stories, quotes and poetry. Please reference authors!
• Prayer Requests -
  Prayer and well-wishes requests for CDH patients having trouble, family and friends and all other prayer requests
• Non-CDH / Miscellaneous -
  For discussions other than CDH. Laugh about your kids antics, cry about
  losing a loved one, vent about your boss... just respect the site rules
  and you can write about anything here.

More Medical Info &Support

• In Utero Procedures -
  For families of cherubs who had in utero repair, tracheal ligation or other in utero procedures
• CDH & ECMO -
  Dealing with CDH and Extracorporeal Membrane Oxygenation machines.
• Feeding Issues -
  Dealing with oral aversions, NG-tubes, G-tubes, Mic-Key buttons, feeding therapies, etc
• Developmental Issues -
  Dealing with developmental delay, cerebral palsy or other cranial, cerebral or behavioral issues
• Long Term Pulmonary Issues -
  Dealing with asthma, lung function tests, vent or oxygen dependency, and other lung issues.
• CDH & Syndromes -
  Dealing with CDH and syndromes or chromosomal abnormalities
• Multiple Births -
  CDH within mulitples - twins, triplets, quintuplets, etc
• Other Medical Issues -
  Dealing with chest pectus, scoliosis, allergies or any other medical issue
• CDH & Growing Pains -
  Growing up after having CDH is still an uncharted territory. Here you
  can talk to other parents about dealing with puberty, playing sports,
  having children of their own and much more.
• More Than 1 Cherub -
  Families dealing with more than 1 CDH baby (2% odds)
• Medical Care & Insurance Praises / Comments -
  Parent opinions on hospitals / doctors / nurses and other medical care providers.
• Other Conferences -
  Medical conferences, grieving parent conferences, etc

CDH Research

• Research Studies (Public) -
  Research Studies actively recruiting CDH patients / families
• CHERUBS CDH Research -
  CHERUBS CDH Research Survey, collaborations on CDH Research with other organizations and other information.
• Research Links -
  Links to research papers on CDH
• Research Papers -
  Research papers, articles, and more - also see Research Links!

Local CDH Support - States & Countries

United States- For members in the United States

Northeastern USA

• ~ Northeast USA - forum for all members in the Northeastern United States
• Connecticut
  - forum for members in Connecticut
• Maine
  - forum for members in Maine
• Massachusetts
  - forum for members in Massachusetts
• New Hampshire
  - forum for members in New Hampshire
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  - forum for members in New Jersey
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  - forum for members in New York
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  - forum for members in Pennsylvania
• Rhode Island
  - forum for members in Rhode Island
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  - forum for members in Vermont

Southern USA - South United States

• ~ South USA - Forum for all members in the Southern United States
• Alabama
  - forum for members in Alabama
• Arkansas
  - forum for members in Arkansas
• Delaware
  -  forum for members in Delaware
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• South Carolina - forum for members in South Carolina
• Tennessee - forum for members in Tennessee
• Texas - forum for members in Texas
• Virginia - forum for members in Virginia
• Washington DC - forum for members in the District of Columbia
• West Virginia - forum for members in West Virginia

Midwestern USA

• ~ Midwest USA - forum for all members in the Midwestern United States
• Illinois - forum for members in Illinois
• Indiana - forum for members in Indiana
• Iowa - forum for members in Iowa
• Kansas - forum for members in Kansas
• Michigan - forum for members in Michigan
• Minnesota - forum for members in Minnesota
• Missouri - forum for members in Missouri
• Nebraska - forum for members in Nebraska
• North Dakota - forum for members in North Dakota
• Ohio - forum for members in Ohio
• South Dakota - forum for members in South Dakota
• Wisconsin - forum for members in Wisconsin

Western USA

• ~ West USA - forum for all members in the Western United States
• Arizona - forum for members in Arizona
• California - forum for members in California
• Colorado - forum for members in Colorado
• Idaho - forum for members in Idaho
• Montana - forum for members in Montana
• Nevada - forum for members in Nevada
• New Mexico - forum for members in New Mexico
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Pacific, Military & US Territories

• Alaska - forum for members in Alaska
• Hawaii - forum for members in Hawaii
• APO's - forum for members in the US Armed Forces stationed overseas
• American Somoa - forum for members in American Somoa
• Guam - forum for members in Guam
• Northern Mariana Islands - forum for members in the Northern Mariana Islands
• Puerto Rico - forum for members in Puerto Rico
• U.S. Virgin Islands - forum for members in the Virgin Islands

Canada - forum for CHERUBS members in Canada

Mexico - forum for CHERUBS members in Mexico

Europe

• Belgium
  - forum for CHERUBS members in Belgium
• Denmark
  - forum for CHERUBS members in Denmark
• France
  - forum for CHERUBS members in France
• Germany
  - forum for CHERUBS members in Germany
• Great Britain
  - forum for CHERUBS members in England
• Greece
  - forum for CHERUBS members in Greece
• Ireland
  - forum for CHERUBS members in Ireland
• Spain
  - forum for CHERUBS members in Spain
• Italy
  - forum for CHERUBS members in Italy
• Lithuania
  - forum for CHERUBS members in Lithuania
• The Netherlands
  - forum for CHERUBS members in Holland
• Northern Ireland
  - forum for CHERUBS members in Northern Ireland
• Norway
  - forum for CHERUBS members in Norway
• Romania
  - forum for CHERUBS members in Romania
• Scotland
  - forum for CHERUBS members in Scotland
• Australia & South Pacific
• Australia
  - forum for CHERUBS members in Australia
• New Guinea
  - forum for CHERUBS members in New Guinea
• New Zealand
  - forum for CHERUBS members in New Zealand

Asia

• Hong Kong
  - forum for CHERUBS members in Hong Kong
• India
  - forum for CHERUBS members in India
• Japan
  - forum for CHERUBS members in Japan
• Malta
  - forum for CHERUBS members in Malta
• Singapore
  - forum for CHERUBS members in Singapore
• Turkey
  - forum for CHERUBS members in Turkey

South America

• Brazil
  - forum for CHERUBS members in Brazil
• Chile
  - forum for CHERUBS members in Chile
• Columbia
  - forum for CHERUBS members in Columbia
• Peru
  - forum for CHERUBS members in Peru
• Venezuela
  - forum for CHERUBS members in Venezuela

Africa

• Egypt
  - forum for CHERUBS members in Egypt
• South Africa
  - forum for CHERUBS members in South Africa
• Oman
  - forum for CHERUBS members in Oman
• United Arab Emirates
  - forum for CHERUBS members in the UAE
  

Mideast

• Israel
  - forum for CHERUBS members in Israel
• Pakistan
  - forum for CHERUBS members in Pakistan
• Saudi Arabia
  - forum for CHERUBS members in Saudi Arabia

CHERUBS Volunteers

Meet Our Wonderful Volunteers! - Meet our wonderful volunteers and learn how you too can help at CHERUBS!

Volunteer Comments, Recruitment and Information - Want to praise your state rep or find out who to thank for that holiday

card? Want to see what positions need to be filled? Here is the info! :)

CHERUBS 2010 International CDH Conference Details!!!

CHERUBS 2010 International CDH Conference Details!!!

CHERUBS 2010 International Member Conference

May 13- 16, 2010
Orlando, Florida

Guest Speakers
CDH Research Teams
Round Table Discussions
Pizza Party
Kid's Entertainment
and more!


Summer Bay Resort Holiday Inn Express
Orlando, Florida

$65.00 per night special conference rate
To book at this rate, you must reserve  your room by April 13, 2010!


Our conferences are designed for families of CDH survivors, grieving CDH families, adult survivors and CDH researchers!  

Since our first conference in 2000, CHERUBS is proud to work with the world's best CDH hospitals and researchers to bring the families and the medical world together.   Our 2009 conference bought together 8 CDH groups and families from 4 countries!  

Members who have attended our conferences will tell you that they learned so much more about CDH, made new friends and gained a lot of support.

Because our conferences are confidential to maintain privacy and allow parents to talk freely about their journeys with CDH, we only allow members of CHERUBS to attend.  This is also to keep our members safe and medical information private.   All CDH parents are invited to join CHERUBS for free by registering at our site at http://www.cdhsupport.org

CHERUBS CDH Conference

• 2010 Conference
• 2010 Researchers
  
• 2010 Sponsors
• Hotel Information
• CDH Family Registration
• Researcher Registration
  
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Past Events

• 2009
• 2008

CHERUBS

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About Our CDH Conference:

Expect to learn a lot about Congenital Diaphragmatic Hernia!   Meet new friends, see old friends and participate in research for various hospitals.  

For safety and privacy of our members, you MUST be a member of CHERUBS to attend.  You may register for free at http://www.cdhsupport.org/members

Children are welcome and babysitting services will be provided during conference hours.   Volunteer babysitters are needed and all parents who request babysitting are obligated to donate a minimum of 1 hour of volunteer time per child to help out.

The hotel offers free breakfast and shuttle to and from the amusement parks.

Families are responsible for all other meals and all transportation, accomodations and entertainment.

CHERUBS does not charge a conference fee.

Many families of survivors are eligible for grants to cover travel expenses to medical conferences.  Ask your child's social worker for more information.

Registration:

Make sure to register with us so that we can expect you!   Registration deadline is May 1, 2010.

CHERUBS has a block of 20 rooms reserved at a discount rate at the Summer Bay Resort Holiday Inn Express.   They are available on a first come, first serve basis.    To book at $65.00 per night, you must reserve a room by April 13th.

If you are coming alone and would like to share a room with another member, visit our forums to find a roommate.

Conference Schedule:

Thursday, May 13, 2010

7:00 - 9:00 pm - Pizza Party and Introductions

Friday, May 14, 2010 - CDH Support

8:00 am - 8:45 am Round Table Discussions Session 1

• For CDH Survivors (choose one)
• Physical and Occupational Therapies
  
• Feeding Issues
  
• For Grieving CDH Families (choose one)
• Faith & Doubts In Grief
  
• Dealing With Anger
  

9:00 am - 9:45 am Round Table Discussions Session 2

• For CDH Survivors (choose one)
• IEPs for School Age Children
• Early Intervention for Infants & Toddlers
• For Grieving CDH Families (choose one)
• Grief and Siblings
• Dealing With Special Days
  

10:00 am - 10:45 am Round Table Discussions Session 3

• For CDH Survivors (choose one)
• Dealing with Family & Friends
• Marriage & Having a Special Needs Child
• For Grieving CDH Families (choose one)
• Dealing with Family & Friends
• Marriage & Grief

11:00 am - 11:45 am Round Table Discussions Session 4

• For CDH Survivors (choose one)
• Pregnancy After CDH
• Helping Other CDH Families
• For Grieving CDH Families (choose one)
• Pregnancy After CDH
• Creating Something Good From Sadness

Saturday, May 15, 2010 - CDH Research

8:00 am - 11:00 am - Guest Speakers On Current CDH Research Studies

8:00 am - 9:00 am  - Meaghan Russell and Mauro Longani from Mass General

9:00 am - 10:00 am  - Speaker Information coming soon!

10:00 am - 11:00 am  - Speaker Information coming soon!

11:00 am - 12:00 pm  View Research Booths, Sign up for CDH Research Studies

Sunday, May 16, 2010 - CDH Awareness

8:00 am - 8:30 am - "Current and future global efforts to raise CDH Awareness" by Dawn Williamson, President & Founder

8:30 am - 9:30 am - Group discussion on how we can raise more CDH Awareness as a community

9:30 am - 10:30 am - Group discussion on how families can raise CDH Awareness in honor and in memory of individual cherubs.

10:30 am - 11:00 am - Saying Good-byes

Our 2009 Conference in San Antonio, TX

Our 2008 Conference in Durham, NC