Open Letter to James Warren of the New York Daily News

In response to an opinion piece written in the New York Daily News:

Dear Mr. Warren,

Families affected by Congenital Diaphragmatic Hernia have been fighting for public Congenital Diaphragmatic Hernia Awareness for many years now. On March 25th, 2015, Senator Jefferson “Jeff” Sessions from Alabama, introduced the bill and congress approved the resolution S.Res. 115: A resolution designating April 2015 as “National Congenital Diaphragmatic Hernia Awareness Month” for the 4th consecutive year.

  Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
 

   Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.

   Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.

   CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.

A volunteer at CHERUBS- The Association Congenital Diaphragmatic Hernia Research, Awareness and Support read an article posted by James Warren at New York Daily News on March 29th, 2015 and was in total shock and disbelief that someone would poke fun of such a horrible birth defect leaving affected CDH families in tears.


The article starts off stating...

And closes with...

Comments to the article are even worse. One comment states...

"As I live and breathe! Thank you, GOP controlled Congress, for making April Hernia Awareness Month!" "Let the month of May become Clown Appreciation Month, so giant red shoes will fly off the shelves across the land and we as a nation can bow our heads in solemn prayer and gratitude to the biggest Bozo, Mr. Speaker, John "Bozo" Boehner.".

Thanks James Warren and New York Daily News for making Congenital Diaphragmatic Hernia Awareness Month a mockery. Our families deserve way better than this. These babies need to be heard. Click here to read the full article. To learn more about Congenital Diaphragmatic Hernia visit www.cdhawarenessday.org.

To contact James Warren:
Twitter
Email

To contact New York Daily News:
Facebook
Twitter
Email

Sincerely,
Felecia Woodruff
CHERUBS CDH Awareness Committee Leader
awareness@cherubs-cdh.org 

U.S. House of Representatives Introduces Resolution for CDH Awareness Month

H. Res 144 that was introduced this week in the United States House of Representatives to make April, 2013 "National Congenital Diaphragmatic Hernia Awareness Month" by Rep. Martha Roby (R-AL) and co-sponsored by Rep. George Holding (R-NC).  

A companion bill was passed unanimously in the Senate on March 20, 2013 - S. Res. 85 which was sponsored by Senator Jeff Sessions (R-AL) and co-sponsored by Senator Ben Cardin (D-MD).

Congenital Diaphragmatic Hernia (CDH) affects 1600 babies a year in the United States, taking the lives of 800 children.  CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. The cause is unknown.  There is no awareness and very little research funding. 

April 19th Parade of Cherubs in Washington DC - International Congenital Diaphragmatic Hernia Awareness Daily Celebration

April 19th Parade of Cherubs in Washington DC International Congenital Diaphragmatic Hernia Awareness Daily Celebration Join us as we march in the Parade of Cherubs from the Lincoln Memorial to the Washington Monument to Capitol Hill where we will meet with Congress and raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill.   Everyone is welcome to participate.  REGISTER HERE - http://cdhawareness.eventbrite.com/ When - Parade starts at 10:00 am at the Lincoln Memorial in Washington, DC on Thursday, April 19, 2012.  On Friday, April 20th we will visit the White House. Where - a full parade route will be posted soon, as well as information on stops on the DC Metro so you can park and ride into DC. What - we will march 2.7 miles from the Lincoln Memorial to the Washington Monument, past the White House to Capitol Hill.  At Capitol Hill, we will tour and meet with Senator Jefferson Sessions, sponsor of our CDH Research Bill.   Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness. Who Can Participate - anyone who wants to raise CDH Awareness.  You MUST register with us to participate!  You MUST fill out a form (to be posted soon) before February 29th for us if you wish to tour the Capitol and White House with us. What to Wear - CDH Awareness gear, the official CDH Awareness Ribbon.  All children are encouraged to wear wings.  Wings stand out better on bright colored clothes.  Wear comfortable walking shoes!  For the White House visit on Friday, please also wear CDH Awareness Gear! What Not to Wear - Anything trademarked or copywritten materials or phrases.  No turquoise please.  Wings - you can borrow wings at breakfast at the hotel at 8:00 on April 19th or purchase your own wings at http://www.savethecherubs.org Accomodations - we are currently working on hotel discounts.  They will be posted by February 20th. Special thanks to Mandy Sroka Photography for being our official photographer for the even, Chic Events Productions for all their planning help and Alarm Security for sponsoring the wings! Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness! CDH Kids Song I'm a real live cherub but I don't have wings When I was a baby the doctor had to fix things My tummy was in my chest and it was hard to breathe He put it all back and here's where he fixed me! Congential Diaphragmatic Hernia Research Bill In support of research funds for the severe birth defect, Congenital Diaphragmatic Hernia. Sponsor - Sen. Jefferson Sessions 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. Look Up Your Congressmen To find his / her mailing address Download Letter to Send To Your Senator / Congressman Include The CDH Research Bill and a photo of  your cherub Sign the CDH Research Bill petition and ask others to sign as well! Event Registration Online for 2012 Parade of Cherubs in Washington DC Free Facebook Cover Banner:   Order commemorative CDH Awareness Gear Feel free to download this shirt graphic to raise CDH Awareness:    REGISTER HERE - http://cdhawareness.eventbrite.com/

CHERUBS E-Newsletter Is Out!

To see the full, clearer view of the E-Newsletter, click here.
Subscribe - http://eepurl.com/gtYgH





CHERUBS CDH News

Click here to get the new CDH Awareness & Research Facebook Timeline Cover, one of several new free graphics offered by CHERUBS

CHERUBS in the Coastal.com Contest - Contest Ends On February 5th!

Between now and February 5th, CHERUBS is in the Coastal contest at Crowdrise.com, competing against 9 other charities for $5000 for CDH Research!  Can you help?  http://www.crowdrise.com/coastal2012

The charity who raises the most donations wins $5000. Charities keep all their donations and the first $5000 in donations was matched by Coastal - CHERUBS raised $1800 in matches!

http://www.crowdrise.com/coastal2012

Every donation will bring us closer to winning the additional $5000 for CDH Research!

$50,000,000 CDH Research Bill
We are still working hard on getting members to write to your Congressmen in support of the $50,000,000 Congenital Diaphragmatic Hernia Research Bill!   Have you sent your letters in yet?  We have sample letters you use at http://www.cdhbills.org   Most will write you back but no, you won't get a pretty proclamation with a gold seal... what we will get is photos of these children on their first birthdays because with research more babies will survive CDH!

Also, don't forget to sign the petition and if  you're on Facebook, you can use the new CDH Awareness & Research Cover (above, at top) on your timeline!

2012 Parade of Cherubs In Washington DC

We have tentatively planned to hold a Parade of Cherubs in Washington DC on Thursday, April 19th in Observance of the Day of Congenital Diaphragmatic Hernia Awareness Daily Celebration.  We work extra hard on this day each year to raise CDH Awareness and promote the need for DAILY awareness because April 19th is the anniversary of the removal of the trademark on "Congenital Diaphragmatic Hernia Awareness".  Around the world families hold events, fundraisers, light candles, release balloons and more.

This year on April 19th we are going to promote not only CDH Awareness but CDH Research by marching through the Mall between the Washington Monument and Lincoln Memorial and up to the steps of the Capitol Building with the children (cherubs, survivors, friends, etc) wearing wings. At Capitol Hill we will visit Congressmen to tell them about CDH and the importance of this research and hopefully we have a chance to chat with our bill sponsor, Senator Jeff Sessions whose grandson, cherub Jim Beau, is in the photo to the left and part of our Save the Cherubs campaign!   So far 30 families have responded who want to attend and we are VERY excited about this event!  If you have never been to Washington DC, this is a great reason to go!   Visit the FB event page for details at http://www.facebook.com/events/168281803280580/

2012 CDH Conference - Save the Date!

 

The 2012 International Congenital Diaphragmatic Hernia Conference will take place on July 26 - 29th in San Francisco, California!   Our conferences include the best CDH Researchers in the world, parent round-table discussions, a Parade of Cherubs with balloon release, Pizzy Party, CDH Awareness news, fun for the kids and more!   We never charge a conference fee, try to make it as safe and affordable as possible and we always learn so much from the researchers and each other!  ALL members are welcome to attend!   Stay tuned for hotel information as well as the conference schedule at http://www.cdhconference.org

Want To Be In A CDH PSA Video?
CHERUBS has been granted a 3 minute CDH PSA through a local Raleigh videography firm.  This video will be used on our sites, social media and submitted to television and radio stations around the country.  We are also in the initial planning phases of creating a 30 minute educational video for our CDH HOPE Totebags.

If you would like to participate in these videos, please e-mail Dawn at dawn.williamson@cdhsupport.org  You can also view all our past videos at our YouTube channel.

Save The Cherubs Posters
We are working on grant funding to mass produce our "Save the Cherubs" CDH Awareness posters for display across the country but in the meantime you can order posters through our store or download the graphics for free and print them yourself to post around town, at your office, at home or at other locations to raise awareness!

We also need more photos!   We especially need seasonal and holiday themed photos for our calendars and events.  You can find out more info on the types of photos, how to make it "candid" and where to order wings at http://www.savethecherubs.org

CDH HOPE Totebags - We Need Your Help!

 

Many thanks to the wonderful families who are donating items to help us fill the CDH HOPE (Helping Other Parents Expecting) Totebags!  Right now we are sending out 30 to 40 totebags per month to new and expectant CDH families at about $40 each for shipping, CDH Baby Books and totebags and other items not donated, so these donations are helping us quite a bit as we expect to spend over $16,000 to fund this service in 2012. 

We are always in need of items for the totebags;  baby hats and booties, baby shirts, blankets, children's books, disposible cameras, handprint kits, soft picture frames, hand sanitizer, hand lotion, chapsticks, baby eye masks, pacifiers and journals.  All donations are labeled in honor / memory of the donor's cherub.  If you would like to donate items, please mail them to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.

Grant Funding & Corporate Donations
CHERUBS is working hard to raise money this year to help with many projects, awareness and research.  Ideally, we'd like to raise over $500,000 in 2012 but we need your help!  Do you know of a Foundation who may grant funding to our charity or does your place of work donate to charities?  If you can help, please contact Ashley at abarry@cherubs-cdh.org

The 2012 CDH Awareness Calendar and 2012 Save the Cherubs calendar are still on sale!!! 
www.cdhawarenessshop.org
Our CDH Awareness Calendar for 2012 features over 1050 cherubs!  If  you have ever sent your child's photo to CHERUBS in the past 16 years, your cherub is included!  These calendars make wonderful gifts for family, friends and medical staff.

Donate

Donate to CHERUBS to help children like Andrew fight CDH.   Donations are tax-deductible and greatly needed.

www.cdhdonations.org
 

Join the Angel Club and donate as little as $1 per month to help CDH babies & families.

Calendar of Events:

Now - February 5th - Coastal.com Contest

Now - February 14th - CDH Valetines Fundraiser

Now - February 14th - CDH Valetines Jewelry Sale

March 17th - Eli's Family Fun Run in Wilmington, NC

March 24th - Great Human Race in Durham, NC

April 19th - Parade of Cherubs, Washington DC

June 30th - Mount Snowden Climb in Wales, UK

July 26-29th - 2012 CDH Conference in San Francisco, CA

October 22nd - 2012 Masquerading Angels Ball in Raleigh, NC



CHERUBS:

CHERUBS Web Site
CHERUBS Forums
  By E-Mail
  On Facebook
  On Twitter
  On YouTube
  On Google+
  On Blogger
  On LinkedIn

Mailing Address:
3650 Rogers Rd #290
Wake Forest, NC 27587

Office Address:
1725 S. Main St
Suite 202
Wake Forest, NC 27587

Phone:  919-610-0129
Toll-Free:  855-CDH-BABY / 855-234-2229
Fax:  815-425-9155



Valentine's Day Jewelry Fundraiser:

We have several items to offer this year from great people helping us to help babies born with Congenital Diaphragmatic Hernia.   Get your order in for Valentine's Day!!!

 

Cherub Charm from PeekabooICU.com fits Journey Bead necklaces and bracelets.  Just $3.00 each.

 

 

 

 CDH Bracelet from Bunky's Bama Blankies N'stuff

 

 

 

  CDH Awareness Bracelet from NTJ Bracelets & Bows

 

 

 

Lots of different CDH & cherub necklaces and bracelets over at Lillybeck Originals!

 

 

 
NEW- CDH Awareness Bracelets
Now offering Yellow Bracelets and sets of 3!

Silicone CDH Awareness Bracelets directly from CHERUBS

 

Tons of CDH Awareness Ribbon jewelry and other items in CHERUBS Cafepress Store

 

 

And for the men...

NEW - CDH Neckties

Cherub Alexandria, finally home after 5 months in the hospital!



Feel free to use our FB profile photo!

Have you signed the CDH Research Petition? Written to your Congressmen? VERY easy to do!

Congenital 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.

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 CDH Research Bill petition and ask others to sign as well!

 
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.

2011 Congenital Diaphragmatic Hernia Cherubs Video

2011 Congenital Diaphragmatic Hernia Awareness Cherubs

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/

Write your Congressman in favor of the CDH Research Bill - http://www.cdhbills.org/

Participate in "Congenital Diaphragmatic Hernia Awareness Daily" / CDH Prevention Day on April 19 by raising awareness and / or research funds.

Congenital Diaphragmatic Hernia Research Bill

CHERUBS is very proud to present our Congenital Diaphragmatic Hernia Research Bill to be presented to Congress to help promote more federal funding for CDH research.   With the help of our members, other CDH organizations and the public, we are determined to promote CDH Research to help save the lives of babies born with Congenital Diaphragmatic Hernia.

We are currently searching for bill sponsorship.  If you would like to contact your Congressman or Senator and ask for their support of this bill, please visit http://www.cdhbills.org for more information.


-----------------------------------


In request of a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research

Submitted by CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
3650 Rogers Rd. #290
Wake Forest, NC 27587
919-610-0129
research@cdhsupport.org



A 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 2010’.


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.

2 New CDH Bills In Congress - We Need Your Help!

We've spent a great deal of time at CHERUBS talking to our lawyers this week and also we Advisors have been very, very busy for over 2 months now.

We have 2 projects that we'd like your help with:

1. A Congressional bill for CDH Research funds (http://www.cdhsupport.org)

2. A Congressional bill making it unlawful for anyone to own a trademark on awareness of a health or social issue (http://www.ipetitions.com/petition/cdhawareness)

CDH Research is obviously needed and we've been talking about this for a while... I believe it was first bought up years and years ago here at CHERUBS. Time to get moving on that!

The anti-trademark bill would be called "Cherubs Law" for ALL babies affected by CDH. It would not only stop this trademark on CDH dead in it's tracks but it would protect all diseases, birth defects, issues, etc from ever having anyone try to own and profit off of awareness again. This would also save 2 years of legal work by our (pro bono) lawyers and the other party's legal bills - and put more focus by all groups involved where it should be instead of fighting this ridiculous trademark - helping families affected by CDH. But FYI - the trademark legal battle will wage on until "Congenital Diaphragmatic Hernia Awareness" is free to use and raise by anyone.

Both bills are PRO-ACTIVE ways to help CDH families and babies NOW. They are positive steps to major CDH research and to keep all awareness free. Sure, we could write other pieces of paper or raise some research money ourselves - but CDH affects 1000's of a babies every year - we can't wait any longer on abstract awareness bringing research money down the road possibly. Maybe. Some day. CDH needs research now and at CHERUBS we're already doing that research ourselves in the form of our studies and we're promoting the research of hospitals. But wouldn't it be wonderful if the government gave those researchers millions to research CDH right now?

Both bills will be a cinch to pass in Congress - how could they vote no to either? We just have to get them to Congress.

This is where we need your help. We need a Congressman / Congresswoman to submit the bill. With 3000 members, surely one of you has some Congressional connections that would greatly benefit the CDH community and these babies.

If any of you have connections to Washington, please contact me at dawn.williamson@cdhsupport.org