Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Monday, March 31, 2008

Ava's Awareness Walk - Congenital Diaphragmatic Awareness Walk

There was a slight mix up - the walk was Saturday - but it made the paper! Spreading Awareness of the Congenital Diaphragmatic Hernia Birth Defect is always a good thing!

http://www.thehawkeye.com/Story/Ava-walk-033008

TODAY IS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY


We ask that you tell someone about congenital diaphragmatic hernia - send them our link here or to our website http://www.breathofhopeinc.com/ share some of the stories you know, the blogs or Carepages.


Congenital Diaphragmatic Hernia occurs 1 in 2,000 births in the United States and Hospitals and Medical Centers around the US have commented that it appears that it has increased. Each person who knows about this birth defect will be educated. More awareness will mean more education. More awareness and education will bring more funding for research. More research brings perhaps better treatments and possibly finding the cause or perhaps what might be a cause.


Thirty US States have proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day - dozens of Cities and Towns and the Country of Mexico. This is a awesome start - and we will just as these CDH children and families will not be counted out - we will continue until the Turquoise Ribbon is as common as the Pink Ribbon - which is also a wonderful cause!


If you want to do something simple - light a candle at 7 PM your time and extinguish it at 8 PM. In honor and celebration of the children that survive this devastating birth defect, in honor of the families affected by it and in memory of the children who decided wings would be more fun then feet. (They are our heroes!)


Peace.

Saturday, March 29, 2008

Children & Teens Spreading Congenital Diaphragmatic Hernia Awareness!



Betsy shared this with me - children and teens of her Sunday School class are wearing Turquoise for her Amazing son who is fighting his way through CDH. Ned, keep up the fight and we know God is with you!
We LOVE it!

Johns Hopkins Supporting Congenital Diaphragmatic Hernia Awareness


Johns Hopkins ECMO Bulletin Board
with our Congenital Diaphragmatic Hernia Awareness TM Day Poster in the center
and also an image of the Maryland Proclamation below it!
And above both - Jack and his opinion of CDH and ECMO!
Thank you Vicki - and Gary!

Wednesday, March 26, 2008

A Day For Turquoise on Monday, March 31





Article in the Gasconade County Republican Newspaper about our dear Jean and her family written extremely well by Dave Marner.



Dave - if you read this - this article gave me good tears! Thank you!




Monday, March 24, 2008

THE TURQUOISE PROJECT

Breath of Hope, Inc is launching a contest open to all - we will award a $25 gift card to four winners!

Take a picture of your Turquoise - how you wear it display it or incorporate the color - email cdhawarenss@yahoo.com - you will be invited to the Flickr Turquoise Project Group to share you photos.

Four photos will be chosen as winners - but we are all winners for promoting Congenital Diaphragmatic Hernia AwarenessTM!

We will accept photos until after Congenital Diaphragmatic Hernia Awareness Day - March 31, 2008 - the cut off for this date will be April 10, 2008.

The Breath of Hope, Inc. Board of Directors will then vote on the photos and award the winners their gift cards - perfect time - Tax Time - we could all use a gift card after tax time!

Saturday, March 15, 2008

Congenital Diaphragmatic Hernia Awareness Day - PROCLAMATION - UPDATE

The following States have proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia Awareness TM Day! (Some have proclaimed the WHOLE MONTH of March too!)
THIS IS 28 States out of 50 - over half - two are pending!

Alabama - whole MONTH of March
Alaska
Connecticut
Georgia
Illinois
Indiana
Iowa - whole MONTH of March
Kansas - whole MONTH of March
Kentucky
Louisiana
Maine
Maryland – the WHOLE MONTH too!
Massachusetts
Michigan
Mississippi
Missouri
Nebraska
New Hampshire
New Jersey - pending
Nevada
Oklahoma
Ohio
Oregon - pending
Pennsylvania
Rhode Island
South Carolina
Tennessee
Texas
Wisconsin

Cities that Have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day!

City of Charlotte, North Carolina has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness Day TM! YEAH! Way to go Holly!

Schaumburg, IL as Proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness DayTM! Way to go Theresa (and Donny too!)

Cincinnati, Ohio has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Owensville, MO - has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Gering, NE - has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Kansas City, MO - has proclaimed March 31 as Congenital Diaphragmatic Hernia Awareness TM Day!

Columbus, OH – has Proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

Huntsville, AL – has Proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

City of Athens, TX - has proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

The County of Gasconade, Missouri - has proclaimed March 31, as Congenital Diaphragmatic Hernia Awareness TM Day!

The Country of Mexico will be proclaiming March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day!

Thursday, March 6, 2008

Greg Everett

Stacy, VP and our website guru, graphic designer, writer, editor and woman who wears all hats lost her father early this week. Her father was equally as amazing as his daughter. He left Breath of Hope with a recording he did for us - an amazing voice.

http://starbulletin.com/2008/03/06/business/engle.html

Stacy - our thoughts and prayers are with you and your family.

Monday, March 3, 2008

Congenital Diaphragmatic Hernia Awareness Wristbands Now On Sale!


Turquoise Awareness Wristbands with cdhawareness.com imprinted - these are the same silicone Awareness Bracelets out on the market!
We have the following sizes:
Small/Youth Size - 7 inches
Medium/Adult Women's Size - 7.5 inches
Large/Adult Man's Size - 8 inches
Lots of 5 are $5 each - there is also shipping and handling

Saturday, March 1, 2008

MARCH IS CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS MONTH


In some states - they have proclaimed the entire Month of March as Congenital Diaphragmatic Hernia TM Awareness Month!


Our count down begins - March 31, 2008 - the First Annual Congenital Diaphragmatic Hernia AwarenessTM Day!


We are offering Bloggers this image to add to their blogs!