Please sign the CDH Research Bill Petition

Taken from CHERUBS blog:

2011 CDH Awareness Cherubs Video

Congential Diaphragmatic Hernia Research Bill

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.

How you can help:

1. Look Up Your Congressmen To find his / her mailing address
2. Download Letter to Send To Your Senator / Congressman
3. Include The CDH Research Bill and a photo of your cherub
4. Sign the on-line petition.

 



 
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 - Congenital Diaphragmatic Hernia Awareness Daily Celebration

Taken from CHERUBS blog:



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

1. Tell someone about CDH!
2. "Attend" the CDH Awareness Daily Facebook Event Page
3. Share the video above on Facebook, Myspace, Twitter or your blog and tell others whatCDH is
4. Use any of the graphics below on your blog, site or social media and tell others what CDH is
5. Ask others to participate in the CDH Research Bill and sign the petition
6. Use the above graphics as your profile photo on sites
7. Wear a ribbon
8. Wear a CDH Awareness shirt, hat or other item
9. Make a video in honor/memory of your cherub
10. Teach your children the CDH Kid's Song
11. Add a twibbon to your Facebook or Twitter accountRelease balloons
12. Light a candle
13. Decorate a jar and ask a local store / restaurant to let you set it up until Mother's Day to collect money for CDH Research
14. Start a Firstgiving page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
15. Start a Cause page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
16. Take CDH Awareness ribbon cookies or cupcakes to work
17. Participate in the Save the Cherubs campaign by taking photos
18. Put a sign on your car about CDH
19. Contact your local media to share your story
20. Let your cherub or other children wear wings all day to raise awareness
21. Hold an event or fundraiser (car wash, lemonade stand, collect change, work with local restaurant, etc)
22. Create a CDH Awareness blog or site
23. Collect items for the CDH HOPE Totebag Project
24. Donate to a CDH Research facility
25. Adopt a CDH Hospital

Vote to help charities who help sick children!

CHERUBS is part of Vote For Kids' Health in Pepsi Refresh, a group of charities that help sick children!  Please vote and help sick babie and childrens' because EVERY child deserves to live a long and healthy life!

Join us on Facebook!

 

• CHERUBS - $25,000 to Provide financial assistance for hospital travel expenses to families affected by CDH (Congenital Diaphragmatic Hernia), a rare and often deadly birth defect that affects over 60,000 babies every year.  Text 101202 to Pepsi (73774)

• Alternating Hemiplegia of Childhood Foundation - $250,000 to Find a path to the cure for Alternating Hemiplegia of Childhood (AHC).  Text 104112 to Pepsi (73774)

• Bailey Baio Angel Foundation - $50,000 for Expanded Newborn Screening Education & Assist Affected Families. Text 103868 to Pepsi (73774)

• Rockin' Against Leukemia - $50,000 Refresh the Dream - Rockin' Against Leukemia: Find a Cure by 2015!  Text 103906 to Pepsi (73774)
 

• SSBTR - $5,000 to Students Supporting Brain Tumor Research.  Text 102749 to Pepsi (73774) 

• Hearts For Hope - $5,000 to Help children on the Cardiology Wing at Children's Hospital, Boston.  Text 100100 to Pepsi (73774) 

•  Lorraines Canes - $5,000 to Provide custom walking canes to pediatric patients without insurance.  Text 101132 to Pepsi (73774)

 

 

CHERUBS - Provide financial assistance to families affected by CDH.

Goals

• To financially assist families affected by CDH
• To provide gas cards to help with travel expenses
• To provide restaurant gift cards to help with expenses
• To provide grocery gift cards to help with expenses
• To help with airline ticket and lodging costs when needed

 

Overview

The CDH Family Assistance Fund helps families with the expenses incurred traveling for medical care for very high-risk pregnancies and critically ill newborns. Often families have to travel 100's of miles to hospitals that are equipped to handle babies born with Congenital Diaphragmatic Hernia (CDH) and that provide ECMO, a heart and lung bypass machine, if needed. Congenital Diaphragmatic Hernia 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 of CDH is not known, but it is as common 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.   The hospital stay for a severely affected baby can be as long as 1 year. With the medical bills and emotional stress that these families go through, we want to offer a little help with making travel easier and affordable.

How will the 25K be Used?
Budget Notes: Most pediatric hospitals are affiliated with the Ronald McDonald House, which provides lodging for many of our families. Our request for hotel gift cards are for those traveling long distances overnight to reach a hospital or those rare times when a Ronald McDonald House does not have an empty room.

Though CHERUBS  has just 1 project in this alliance, they have 4 more in this month's contest.   Their goal is to focus on 1 at a time to help the babies with all 5 needed grants so if you have extra votes please vote for one of these projects to help keep them in the top 100 so they will roll over each month.

Click here to vote for all 5 projects at once!

$250k CDH RESEARCH - text message 102542 send to 73774 (pepsi)
$50k Awareness - text 102365 to 73774
$25k Hospital Kits - text 101211 to 73774
$25k Financial Assistance - text 101202 to 73774
$25k Care Packages - text 102123 to 73774

Or click through each one below:

 

Angel Ball, CHERUBS, Shane and Me on the news

News 14 Carolina did an interview today about our Masquerading Angels Ball! 

In Depth: Dawn Williamson, Cherubs

An event this weekend will help unmask the cause of a life-threatening condition among children that doesn't get a lot of attention. It's called congenital diaphragmatic hernia or CDH and News 14 Carolina's Tracey Early sits down with Dawn Williamson, the founder and president of the non profit group "Cherubs," to talk about this year's event.

Click here to view the full video.

Halloween Pasts....

I was blessed to have had a few Halloween trick-or-treating experiences with Shane. 50% of families of babies born with CDH aren't so lucky. And Shane never got to eat a single piece of candy.  I know that doesn't sound like a big deal to most but candy.... 1 simple, childhood pleasure, something "normal".... he missed out on so much.   CDH took his life and so much more.

Many people are "trick-or-treating for CDH" this year to raise funds to help these babie. Please consider participating.

trickortreatforcdh.info

Taking this blog in a new direction...

After working non-stop for the past 6 months on CDH related events, fundraisers, etc, I've come to the conclusion that the public just does not care about the critically ill babies born with CDH.  Distant family and friends care somewhat, but not enough to stand up with us.  The general public with no connection to CDH cares even less. About critically ill newborn babies.

But people will chain themselves to trees for protests, march for animals, picket anything they disagree with. But it's so hard to get them to care about these babies?

Why?

C said something to me the other week "people don't care because they've never heard of it and since they've never heard of it they dismiss it as a scam instead of a cause". Nice, huh? I think he's right. It's a catch 22... can't raise awareness if they dismiss it as a scam.

Every day, I spend hours on CDH awareness. I know 100's of others do too. We've got to work harder. I hope we can win the Pepsi contest somehow.... all of the projects but especially research and awareness. TV commercials for CDH.... maybe then people might care.

This past week I have given out about 1500 fliers about CDH, the contest and the Masquerade Ball.  Most people are curious about the ball and will glance on the info on CDH and the contest.   They just don't care.

After all.... CDH isn't Autism, it's not Breast Cancer, it's not Spina Bifida or Cystic Fibrosis or Cervical Cancer or anything they've heard of.   And if they haven't heard of it, if it doen't have huge celebrity endorsement, the public doesn't care.

So we have to chance that.   

I look at my son's photos.   I CARE!!!!!!!!!!!!!!!   I look at all the cherub's photos.   I CARE!!!!!!!!!!!!!!!  I am one person.  The 3400 families in CHERUBS are made up of individuals too.  But together.... maybe we can make the world CARE!!!!!

This week, one of Shane's friends, Logan (13 yrs old) had major surgery.   I mean, take out his sternum, scrape around his diaphragm MAJOR surgery.   Shane, Logan and Brandon, all born with CDH, the 3 little cherub mustakeers.  I love those boys.   I can admit I was scared to death about Logan this week.  I got on my knees and prayed for him, I begged Shane to watch over him.   Log beat the odds and came home less than 48 hours after surgey he was doing so well.   Can you say.... MIRACLE????    The rest of the world may not pay much attention but Logan's family and friends care.... I CARE.


Below is a photo taken of me at the hospital with a family saying good-bye their little boy.   Oz... sweet little Oz....  he only got to spend 10 hours here.  His family let me be there to meet him and say good-bye too.   This is the part of my work that I hate.... watching a family suffer so badly and not being able to do anything at all to stop the pain and save their child.  But being there with Oz and Kendrah and Chris....  I promised that little boy, just like I promised my own little boy.... I CARE and I will do whatever I can to raise awareness and research.   Oz's family is doing AMAZING things already in his name.   They CARE, not only about him, but all the babies!

I had no intention of ever sharing this photo.  I didn't even know it was taken until Kendrah sent it to me and I wouldn't share it without knowing Kendrah and Chris would share anything to help raise awareness.   But this is the sad side of what we do.  This is the worst case scenerio.  This is what we try so hard to stop... the deaths of innocent little babies who haven't had a chance to live.


So when I go around the State Fair or downtown Raleigh or at other large events and I hand out fliers and I talk about CDH..... it breaks my heart to have people say "no thanks" to taking a flier.   Why don't they care?

We've had 7 newpaper articles in the past 2 months about our charity.  A radio clip started last week.   A tv interview tomorrow.  Our angel ball committee has plastered banners and signs all over 5 towns and handed out 1000's of fliers.  Some days it feels like we're spinning our wheels but we are accomplishing a lot.  In the media world of updates when Paris Hilton breaks a nail or Lindsay Lohen goes into rehab... maybe we can get the world to notice 15,000 babies dying each year and 15,000 more critically ill.  Somehow, some way... we will.


I hope Shane doesn't mind me high-jacking his blog to raise more awareness.   But we need more CDH awareness and everything I do I do to honor his memory.   I do care and I will keep caring and I will keep screaming and fighting and pushing for research and awarenes.  I owe it to Shane, to Oz, to Logan, to all the cherubs.  We all do.