Please Vote Today - This is your daily vote reminder to help babies born with Congenital Diaphragmatic Hernia!
CHERUBS is participating the Vivint Gives Back Contest on Facebook and we need your votes! How to vote:
1. Go to http://www.voteforcdh.org 2. Log in through Facebook and vote
3. Repeat daily through August 27, 2011
Contest Update- In the first 3 days of the contest CHERUBS has accumulated over 5000 votes! Way to go, everyone!!!! We are still battling it out between 1st and 3rd places in a very close race where often the vote difference fluctuates constantly between 100 and 1 or 2. Every single vote really does count. Please consider forwarding this e-mail to your friends and family and asking them to vote in honor / memory of your cherub.
Contest Voter Tip Of The Day- Change your profile photo every day to a different photo of your cherub and bring attention to their CDH journey.
More Contest Info - visit http://www.voteforcherubs.org for information on how you can win prizes in our voter raffle, the contest video, free graphics, learn where the money would go to help CDH babies and more.
Did You Know? - Several genetic research centers are working towards finding the cause of Congenital Diaphragmatic Hernia and often share lab samples to help further each others' research. CHERUBS is proud to work with the wonderful teams at Mass General, DHREAMS and Baylor to help search for the cause and prevention of CDH. Interested in donated blood samples for research? Go to http://www.cdhsupport.org/research.php for more information.
Meet Our Cherubs! - Little Rhett was born in December of 2010. He was born with Congenital Diaphragmatic Hernia and a Ventral hernia. He holds his head independently. Rhett is a special cherub because he is currently in an orphanage in the Ukraine. We have 3 families willing to adopt Rhett here in the United States and make sure that his medical needs are met, as well as give him all the love he so deserves. But international adoptions are expensive and none of these families have the $24,000 it takes to cover plane tickets, weeks in a hotel and the court costs, despite the help from wonderful non-profit Reese's Rainbow who will guide parents through the process. If CHERUBS wins the Vivint Gives Back contest, $10,000 will go to Rhett's adoption fund to help bring him home to a loving family.http://reecesrainbow.org/rhett3106
Thank you all for your support and your votes to help CDH babies!
Submit your cherub to be featured by e-mailing his/her name, photo, date(s) and a short paragraph to membership@cdhsupport.org. By submitting, you give CHERUBS permission to use this data on our site, blogs, newsletters, videos, etc to raise CDH Awareness.
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Public 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.
Please Vote Today - This is your daily vote reminder to help babies born with Congenital Diaphragmatic Hernia!
CHERUBS is participating the Vivint Gives Back Contest on Facebook and we need your votes! How to vote:
1. Go to http://www.voteforcdh.org 2. Log in through Facebook and vote
3. Repeat daily through August 27, 2011
Contest Update- Last night we were in 1st place by 40 votes, this morning we are in 2nd place by 70 votes. This is most definitely a roller coaster ride of a contest where EVERY vote counts!
Contest Voter Tip Of The Day- Belong to a church, club, community or other group with regular meetings? Ask permission to speak about CDH and raise votes and awareness in honor / memory of your cherub!
More Contest Info - visit http://www.voteforcherubs.org for information on how you can win prizes in our voter raffle, the contest video, free graphics, learn where the money would go to help CDH babies and more.
Did You Know? - Over 600,000 babies have been with CDH since 2000. That means over a quarter million babies have lost their lives to this horrible birth defect.
Meet Our Cherubs! - Maxwell Anderson Martin was born on May 5, 2010 with cdh. He weighed 8lbs. 4 ozs. and was 20 1/2 inches long. He was transported to Dayton Children's Hospital from Miami Valley on May 9th and had his cdh repair surgery on Monday, May 10th. He was decided that he was ready to breathe on his own when he ext-abated himself the Friday after surgery. Max had a little trouble learning to eat and gaining weight. He would fall asleep in the middle of taking his bottle. Once Max was eating on his own and the feeding tube was taken out, he was released from the hospital to come home. We waited a long time for our little Cherub and he truly is our Miracle Max. We are so thankful to all the nurses and doctors at both Miami Valley Hospital and Dayton Children's Hospital.
Submit your cherub to be featured by e-mailing his/her name, photo, date(s) and a short paragraph to membership@cdhsupport.org. By submitting, you give CHERUBS permission to use this data on our site, blogs, newsletters, videos, etc to raise CDH Awareness. CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Public 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.
Contest Update- We are battling it out between 2 other charities for 1st place! It's a close race with just 70 votes separating us all. Every vote counts!
Contest Voter Tip Of The Day- Get local businesses to allow you to post fliers featuring a photo of your cherub. Download a flier at the link below.
More Contest Info - visit http://www.voteforcherubs.org for information on how you can win prizes in our voter raffle, the contest video, free graphics, learn where the money would go to help CDH babies and more.
Did You Know? - The odds of having CDH are more likely than being a victim of a tornado, earthquake, flood or lightening COMBINED.
Meet Our Cherubs! - Cameron Bond was born on June 22, 2005 with right-sided CDH. The birth defect was undetected and he was given 10% chance for survival. He had a stroke, was on ECMO, and in the hospital for 4 months. Cameron came home on tube feeds, oxygen, weakness on right side. He walks with a limp and has no use of his right hand. He is currently enrolled in kindergraten.
Feel free to forward this to family and friends!
Submit your cherub to be featured by e-mailing his/her name, photo, date(s) and a short paragraph to membership@cdhsupport.org. By submitting, you give CHERUBS permission to use this data on our site, blogs, newsletters, videos, etc to raise CDH Awareness.
If you're having
troubles with the voting and endorsing process (you're getting an error
telling you to like the page first repeatedly), do the following:
1. On Facebook, go to Account --> Privacy settings2. In the privacy settings page you should see a 'Connecting on Facebook' section. click 'View Settings'. 3. Set 'See your likes, activities, and other connections' to 'everyone'. This process lets the website see that you have liked the Vivint page, and you will then stop receiving this error.
What Will $250,000 Be Used For?
Should CHERUBS win the Vivint Gives Back contest, money won would go to:
$145,000 for CDH Research
$125,000 for collaberative research with Massachusetts General to pay for lab kits for over 100 families for genetic research into CDH
$10,000 for programming for the long term CDH Research study database to review patient histories and similarities
$10,000 to help sponsor a CDH patient, baby Rhett,
who is currently in an orphanage in the Ukraine. We have several
families who want to adopt him and bring him to the U.S.
$30,000 for support services
(support forums, web sites, mailings, newsletters, volunteer software,
toll-free number, adopt a hospital kits and much more). All
services to families are always FREE.
$5,000 for local member get-togethers around the country
$10,000 to CDH HOPE Totebag care packages for newborn and expectant babies diagnosed with CDH
April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY
April 19 Congenital Diaphragmatic Hernia Awareness Daily Celebration is about 1 thing - raising awareness for CDH and the babies it affects. ALL are invited to join in. From any group, any hospital, any country! It is owned by no one, restricted by no one, profited by no one. EVERYONE can join in, even if you personally have not been affected by CDH! CDH hurts babies EVERY day of the year!
♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in! It is a day set aside to raise CDH Awareness and encourage others to do so every single day. ♥
WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!
Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.
In the past year, since CHERUBS and 1000's of CDH families have been able to use the term "Congenital Diaphragmatic Hernia Awareness" freely after winning the fight against the trademark on the phrase on April 19, 2010, we have raised CDH Awareness on an astronomical level. CHERUBS has been on television, in numerous newpaper articles, several national contests, sold 100's of CDH Awareness items, enabled families to use free awareness graphics to get their own CDH Awareness gear, created over 250 personalized CDH Awareness ribbon graphics, submit the CDH Research Bill to Congressmen and found several co-sponsors, raised awareness at many events and conferences, created dozens of videos, included awareness in the CDH Baby Book, created the Save the Cherubs awareness campaign and even the first billboard. All of this was made possible because we could use this phrase freely once again.
On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.
After several years of awareness being inhibited, we have a lot of catching up to do!!!! We are working hard to make 2011 even better than 2010 to raise awareness and help babies affected by Congenital Diaphragmatic Hernia. Join us, wherever you are, in helping the cherubs!
25 Easy Ways To Participate In the 2011 CDH Awareness Daily Celebration
In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia.
CDH affects 1600 babies in the United States every year, with a 50% mortality rate. It occurs when the diaphragm fails to fully form, allowing the organs into the chest cavity and preventing lung growth. The cause of Congenital Diaphragmatic Hernia is not known. There is very little research on CDH, even though it is as common as Cystic Fibrosis and Spina Bifida. More research funds are desperately needed and we are appealing to the United States government to help these babies.
Congenital Diaphragmatic Hernia Research Congressional Bill
To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, and for other purposes.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘CDH Research Act of 2011’.
SECTION 2. FINDINGS.
The Congress finds as follows:
(1) Congenital Diaphragmatic Hernia is a birth defect.
(2) Congenital Diaphragmatic Hernia has a rate of occurrence of 1 in every 2500 babies.
(3) Congenital Diaphragmatic Hernia affects approximately 1600 babies each year in the United States
(4) Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity and preventing lung growth.
(5) The majority of Congenital Diaphragmatic Hernia patients have underdeveloped lungs and/or poor pulmonary function.
(6) Congenital Diaphragmatic Hernia patients often endure long-term complications such as pulmonary hypertension, pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding disorders and developmental delays.
(7) Congenital Diaphragmatic Hernia survivors sometimes endure long-term mechanical ventilation dependency, skeletal malformations, supplemental oxygen dependency, enteral and parenteral nutrition and hypoxic brain injury.
(8) Congenital Diaphragmatic Hernia has a survival rate of 50%.
(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 2000.
(10) Babies born with Congenital Diaphragmatic Hernia endure extended hospital stays in intensive care with multiple surgeries. Extended hospital stays in some cases have exceeded one year.
(11) Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis.
(12) Congenital Diaphragmatic Hernia is diagnosed in utero in only 75% of cases.
(13) Congenital Diaphragmatic Hernia is treated through mechanical ventilation, heart and lung bypass (Extracorporeal Membrane Oxygenation) machines and surgical repair.
(14) Congenital Diaphragmatic Hernia surgical repair is often outgrown thus leading to reherniation and requiring additional surgery.
(15) Congenital Diaphragmatic Hernia does not discriminate based on race, gender, religion, economic status or lack of prenatal care.
(16) The cause of Congenital Diaphragmatic Hernia is unknown.
(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.
(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.
(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.
(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.
SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.
(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.
(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—
(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.
(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.
(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.
(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.
SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.
(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia
(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—
(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;
(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and
(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.
900 photos of children and adults born with Congenital Diaphragmatic Hernia (CDH), a birth defect that affects over 1600 babies every year in the United States. CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive. The cause is not known.
"Cherub" by Matt Panetta, in honor of his brother, cherub Jonathan Panetta.
"I'll Never Let You Go" by The Jammies. Written by Chad Knudsen in honor of his son, a CDH survivor.
For more information, you can visit CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support at http://www.cdhsupport.org/
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; walking 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 16 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. 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. http://www.savethecherubs.org/
Our new fundraising campaign gives everyone the opportunity to be a part of an elite group - angels helping babies who are fighting Congenital Diaphragmatic Hernia!
How do you join? Just donate at least $1.00 to CHERUBS every month through our new Automatted Donation system through PayPal. We know times are tough but every dollar helps and this is a great opportunity to help these babies by donating mere pennies each month without having to remember to send in a donation every 30 days.
About this campaign:
Donate as little as $1.00 per month
If you want to donate more, please do so! You can set up monthly donations in any amount.
It's completely automated, you just sign up once!
It's through PayPal, the internets safest on-line payment software.
Donate through your own PayPal account or your credit card.
