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
• New Jersey
  - forum for members in New Jersey
• New York
  - forum for members in New York
• Pennsylvania
  - forum for members in Pennsylvania
• Rhode Island
  - forum for members in Rhode Island
• Vermont
  - 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
• Florida - forum for members in Florida
• Georgia - forum for members in Georgia
• Kentucky - forum for members in Kentucky
• Louisiana - forum for members in Louisiana
• Maryland - forum for members in Maryland
• Mississippi - forum for members in Mississippi
• North Carolina - forum for members in North Carolina
• Oklahoma - forum for members in Oklahoma
• 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
• Oregon - forum for members in Oregon
• Utah - forum for members in Utah
• Washington - forum for members in Washington
• Wyoming - forum for members in Wyoming

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
  
• Disney & Local Attractions
• Event Items
  

Past Events

• 2009
• 2008

CHERUBS

• Join CHERUBS
• CDH Awareness Shop
• About Us
• Disclaimer
• Contact Us

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

Prayers & Quotes for March 12, 2010

Prayers & Quotes for March 12, 2010

If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org.

Please keep the following in your thoughts and prayers:

Newborn cherub Jayden G. arrived 2/19! He has been on ECMO and came off successfully on the first try. His kidneys are now not functioning like they should and he has been put on kidney dialysis and improvement needs to be seen soon. He has not had his CDH repair.

Newborn cherub Kellan V. arrived 2/14! He is working on coming off the vent, for he has had his CDH repair and is going strong!

Cherub Kiyari M. recently had her PDA closed, however this closure was acting like a pop off valve and now with it being closed as caused her to pass out multiple times, she has had a seizure and a stroke. They removed the plug in her heart on 3/6 and now is on the road to recovering. Please pray doctors are able to find what is happening with Kiyari and the best course of treatment for her pulmonary hypertension.

Angel cherub Caleb has a new sister Ashlynn C. Ashlynn arrived just shy of 36 weeks. Prayers for mom Shandi and baby Ashlynn.

Cherub Nicole T. is had surgery on March 9th to place growing rods, to help fix her scoliosis. She is on the road to recovering.

Cherub Jacob G. has had reoccurring pneumonia and has been in the hospital several times. He is home again, but needs our prayers that doctors can figure out the best course of treatment for Jacob and his lungs.

Cherub Jaxson R. is recovering from RSV, but he is finally home from the hospital.

Cherub Keith H. reherniation surgery went well! He came off the vent after surgery and is recovering.

Cherub Owain P. has reherniated for a 3rd time...surgery is pending.

Cherub Clodagh D. is having a CDH repair to fix her eventration....surgery date is pending.

Cherub Alexander H. is finally coming home! Hopefully he is home for his 2nd birthday!

Newborn cherub Gage H. arrived 3/9 and is fighting!

Cherub Chase K. is having seizure activity and will be put on medication. They are waiting in the hospital for an eeg to be done.

Newborn cherub Micah P. is still in the hospital and needs our prayers and thoughts.

Cherub Scarlette is having a g-tube/fundo/appendectomy and stomach biopsy on 3/22.

Cherub Navaeh is ill and needs our prayers to figure out the cause.

Cherub Carter A. is struggling with a bad cold.

To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications.


Cherubs on Their Way:

Cherub Mekhaai R., due 3/17

Cherub Jeremiah M., due 3/30

Cherub Austin M., due 3/30

Cherub "baby girl J"., second CDH child born into this family

Cherub Joshua C., due 6/4

Cherub Noah A., due 5/30

Cherub Ian H., due 4/26

Cherub "baby boy" K., due 4/16

Cherub "baby girl" A. due 5/20

Cherub Elijah V. due 7/12

Cherub due in about 9 weeks to Shea, Josh & Janzen

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.


Newly Grieving Families:

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.


Today’s Quotes:

"Learn to get in touch with the silence within yourself, and know that everything is life has purpose. There are no mistakes, all events are blessing given to us to learn from." - Elisabeth Kubler-Ross

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." - Leo. F. Buscaglia

"Nobody grows old merely by living a number of years. We grow old by deserting our ideals. Years may wrinkle the skin, but to give up enthusiasm wrinkles the soul." - Samuel Ullman

"Nurses dispense comfort, compassion, and caring without even a prescription." - Val Saintsbury

Important Update On The Trademark On Congenital Diaphragmatic Hernia Awareness

Dear CHERUBS Members, Fan, Family and Friends,

Though paperwork has not been filed officially with the USPTO (you can stay updated through their site at http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2 ), Breath of Hope has posted the following:

http://breath-of-hope.blogspot.com/2010/03/statement-on-trademark-congenital.html

Tuesday, March 9, 2010

Statement on Trademark Congenital Diaphragmatic Hernia Awareness

In light of the ruling regarding the trademark for Congenital Diaphragmatic Hernia Awareness, Breath of Hope has decided to cancel the registered mark. While we feel that the ruling was unfavorable, the Board of Directors at Breath of Hope has decided that we need to move forward in other areas concerning awareness, helping families with this truly horrible diagnosis, and raising money towards research.

Our intentions of trademarking Congenital Diaphragmatic Hernia Awareness were never to stop others from raising awareness, create lawsuits, or negatively impact the CDH community. Instead, we were attempting to protect what we perceive as our intellectual property. It also should be stated there are literally thousands of health conditions as registered trademarks in use today, including Prematurity Awareness Day®, which does not impede anyone from raising awareness or conducting research.

We, the Board of Directors, are saddened by the misleading, incorrect, and negative information that has been advertised all over the internet by others. We have no intentions of slandering any individuals or other organizations, we feel strongly that this is immature behavior and it is a deterrent from what our goals really are. We will continue to strive to support parents and families, the medical community and other CDH groups and nonprofits.

- Breath of Hope Board of Directors

We are very, very glad that they intend to remove the trademark. It would be an answer to prayers said by 1000's in the CDH community for many years. I hope and pray that this post is truthful and that BoH is quick about filing to remove this trademark. This would be a great relief to all the CDH community and CDH Awareness would be returned where it belongs - to ALL families and researchers affected by Congenital Diaphragmatic Hernia.

However, I'm sad that it's taken so much time, effort, resources and conflict in the CDH community to deal with this trademark from the start. Several years, over 6500 signatures from CDH families from around the world, lawyers and a very firm letter from the USPTO itself to let Breath of Hope know that they indeed, had no hope in this case to get them to remove the trademark... all of it needless and negative and not serving the CDH community in any positive way. None of this should have happened.

I also feel that the inaccuracies in that statement and blatant lies that it was never used to harm others (there are court records in 2 different courts plus IRS records to prove otherwise) and there are other trademarked cases of awareness on the books (yes on diseases - but not 1 on awareness of a cause except this one) are just further needless attacks on others who spoke up against this behavior.

I hope and pray that the attacks and false filings against CHERUBS and other stop and that ALL CDH charities focus on their own services and members and work towards a more positive CDH community like the one we had before all this started.

Our babies deserve that.

On behalf of CHERUBS and CDH families in 38 countries, I say to Breath of Hope, Incorporated... "Thank you for doing the right thing by our children".

This is a GLORIOUS day for ALL the Congenital Diaphragmatic Hernia Community!!!!!! Through the hard work, dedication and commitment of several CDH organizations, 1000's of families, 100's of researchers and our amazing pro bono attorneys, Breath of Hope has finally made the right decision CDH awareness will be restored. Way to go everyone - we have done our children proud!!!!!

Dawn M. Torrence Williamson
President & Founder

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

Volunteer run 501(c)III non-profit organization serving over 3000 CDH families in 38 countries. Searching for the cause, prevention and best treatments of CDH since 1995.

http://www.cdhsupport.org
http://www.cdhresearch.org
http://cdhsupport.blogspot.com
http://www.cdhconference.org

Phone - 919-610-0129
Fax - 815-425-9155
Mailing Address - 3650 Rogers Rd #290, Wake Forest, NC 27587, USA

831 Philanthropy Project - Photographer donates portion of sales to CHERUBS for the month of March!

8 3 1 Photography is donating a portion their profits for March to CHERUBS in memory of Jana Moldenhauer Lewallen's adorable son Drew. 

Thank you 8 3 1 and Jana! :)


http://mim.io/310b2

831 Philanthropy Project

To Whom Much is Given, Much is Expected!

We here at 831 Photography have been blessed! We firmly believe that "To whom much is given, much is expected!" and so we started the 831 Philanthropy Project!


Each month, we choose a cause or organization that we believe in and we donate a percentage of our sales to them.


This is not a percentage of profit, this is a percentage of TOTAL SALES!


March's Project: CDH Awareness


The following was written by my friend Jana. The picture above is her son Drew. It is a long passage, but please take the time to read it and you will understand why this cause is so near to my heart. Drew would have turned 4 years old this month and that is why I am dedicating March's donations to him!

I discovered that I was pregnant in July 2005. In October of that same year, my husband and I went for the routine ultrasound given mid-pregnancy. The hospital staff acted strangely but would only tell us that we could not see all four chambers of the heart. We thought it curious because we could clearly see them. Three days later, we found ourselves in the office of a perinatologist receiving a level II ultrasound.


The doctor entered the room and bluntly told us that our son had a condition known as a congenital diaphragmatic hernia (CDH) and had a 50% chance of survival. I was offered the option to terminate the pregnancy but, in conjunction with my husband, I declined. What followed was an anxiety filled pregnancy, multiple frequent ultrasounds, biophysical profiles and stress tests. I also did extensive research on the condition and what I found was not promising.


Congenital diaphragmatic hernia affects approximately 1 in every 2,000 to 3,000 pregnancies. There is no known cause and little research being done on the defect and its cause(s). Outcomes depend on the severity of the defect. Simply put, a congenital diaphragmatic hernia is when the diaphragm does not completely form during weeks 7-10 of development. This lack of complete formation of the diaphragm allows the stomach, intestines, liver, etc. to migrate into the chest cavity. This in turn stunts lung development. Children born with CDH are almost always placed on a ventilator to assist in breathing.


One of the biggest problems with CDH is known as persistent pulmonary hypertension of the newborn (PPHN). This is when the heart and lungs cannot adequately oxygenate the blood. In severe cases, the child will need to be put on extended heart/lung bypass known as ECMO (extra corporeal membrane oxygenation). If this happens, the chance of survival decreases drastically.


It was decided that labor would be induced on March 7, 2006, in order to allow the full medical team needed to be present at the birth. The induction did not work and Raymond “Drew” Lewallen was born via c-section on at 11:58 a.m. March 8, 2006. Drew weighed in at a strapping 7 lbs. 10 oz. He let out two weak cries before he was intubated and rushed out of the room. A doctor pulled my husband out into the hallway to tell him that things did not look good at all. It was then left to my husband to tell me.


After his birth, doctors were able to definitively see Drew’s lung tissue and what organs were in his chest (the fewer, the better). ALL of his abdominal organs were in his chest and he had 85% of a right lung and a left lung “bud.” Approximately 30 hours after birth, Drew was placed on ECMO. He remained on ECMO for 15 days and was successfully weaned off of it.


He underwent extensive repair surgery, moving his organs back to his abdomen and patching the hole in his diaphragm. Drew did well through surgery and thereafter. However, while on ECMO, his kidneys were irreparably damaged and he suffered kidney failure. We were told this heart failure would happen fairly quickly.


On April 16, 2006, Easter Sunday, my husband and I made the decision to discontinue support for our son. Drew passed away in my arms at 3:29 p.m., never having taken a breath on his own. He lived and fought for 5 weeks and 4 days.


Drew’s father, older sister and I were blessed to have him in our lives, even for such a brief period of time. His little brother was born 1 year and 3 days after his death. Drew remains a daily presence in our lives. I founded an informational website called CDH Rainbows for families dealing with CDH and work with CHERUBS, a non-profit, to continue to raise awareness of this devastating condition. Over the past couple of years, more and more research has begun to discover the causes of CDH and the best way to treat CDH. CHERUBS is on the front lines fighting for such research on a daily basis.


We will be donating 5% of our sales in March to CHERUBS in honor of Drew

If you have a cause or organization you believe in, feel free to submit it to us! You can email: Stephanie@831Photography.com and submit your idea, cause or organization.

Cherubs are proclaimed the international symbol of Congenital Diaphragmatic Hernia Awareness

Long before there were "awareness ribbons" and "awareness bracelets", long before it was fashionable to wear a color for a cause - there was CHERUBS.  In 1995, with the creation of the world's first CDH non-profit, cherubs were proclaimed the international symbol of Congenital Diaphragmatic Hernia Awareness.   Most CDH families refer to their CDH patients as "cherubs".

Cherubs are baby angels, symbols of hope, faith, miracles for newborn cherubs and survivors.  They are a symbols of those babies lost to CDH as well.  This symbol was carefully chosen to represent all families affected by this devastating birth defect and CHERUBS was named for 2 babies in particular;  Preston Montague and Andrea Jones, both lost to CDH and both hospital roommates of our founder's cherub, Shane Torrence.   There could not be a more accurate or special symbol for babies affected by Congenital Diaphragmatic Hernia than cherubs.

Since 1995, the word "cherub" has raised such CDH Awareness on the internet!   Do a search for "cherub" or "cherubs" on any major search engine and you will find CHERUBS in the top 10 - raising CDH awareness along the way!  In fact, several CDH families found our organization accidentally by searching for baby angels on-line.   Even Wikipedia has included our charity on their page about cherubs. 

Look at all the wonderful CDH awareness we are raising on-line every time someone does a search for "cherub" or "cherubs".   These ranks are out of the millions of web sites that feature angels and cherubs.

Google - Ranked #2, behind Wikipedia's page where we are also included
Yahoo - Ranked #2, #5, #8 and #9
Bing - Ranked #3
Ask.com - Ranked #1, but that has nothing to do with sharing Wendy Petty as a spokesperson for Ask.com and CHERUBS!  :)
Altavista - Ranked #2, #5, #7 and #8
Dogpile - Ranked #6
Goodsearch -  Ranked #2, #5, #8 and #9 but they pull from Yahoo.com

 

In celebration of 15 years of serving the Congenital Diaphragmatic Hernia community and in celebrating our unique symbol of hope, miracles, faith, kindness and compassion, we will be soon adding more "cherubs" into our sites, projects, and the CDH Awareness Shop!