Raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more. Will you care? http://www.cdhsupport.org
In memory of Shane Torrence (1/28/93 - 9/11/99)
Shane
In memory of Shane Torrence (1/28/93 - 9/11/99) A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more. Will you care? http://www.cdhsupport.org
I haven't updated this blog in a while. I've been really, really busy with CHERUBS and all the events we have going on. CHERUBS is doing great and just won $25,000 in a contest this week (thank you to everyone who voted!!!!). We have a lot of fundraisers going on right now as well, including a Masquerade Ball on October 22nd and a Christmas Vendor Show on November 13th. If you're in or near Raleigh, we'd love to see you at both.
This weekend is the 10th anniversary of 9/11 and the 12th anniversary of Shane's death. I miss him more than words can say and right now I have no words, except I love you, Shane. Thank you for giving me the chance to be your mommy for 6 and a half years. I just wish I had 60 more years.
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
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.
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
