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, November 26, 2007

Congenital Diaphragmatic Hernia Awarness TM Day Update

Breath of Hope ~ Congenital Diaphragmatic Hernia Awareness TM

Update on the States that have so far issued Proclamations or have confirmed that they will. These are the States that have done so:

Mississippi
Iowa
Pennsylvania
Virginia - pending
Maryland
Nebraska
New Hampshire
Alabama
Georgia
Michigan
Maine
Wisconsin
Indiana
Connecticut

We just heard from a member in Oregon and she is sending them their request of the file of the Proclamation so they don't have to re-type it! YEAH!

That will be 15 of 50 - this is a fantastic start!

If interested and your state is not listed please go to the Breath of Hope website and click on the Awareness tab! Information is there and you can contact us at cdhawareness@breathofhopeinc.com and we will be happy to take your information and send you the sample letter and sample Proclamation!

Many of our members are also planning Awareness Events in their communities on March 31, 2008 - including wearing turquoise for the day - a very powerful message to send for Congenital Diaphragmatic Hernia Awareness TM....

Sunday, November 25, 2007

Generous Hearts and Wholesome Actions

It is worth reminding ourselves that what brings us the greatest joy and satisfaction in life are those actions we undertake out of concern for others. Indeed we can go further. For whereas the fundamental questions of human existence, such as why we are here, where we are going, and whether the universe had a beginning, have each elicited different responses in different philosophical traditions, it is self-evident that a generous heart and wholesome actions lead to greater peace. --Dalai Lama

____________________

The above quote from the Dalai Lama reminded me of our members at Breath of Hope

When new members join - we know that they too have been affected by the birth defect Congenital Diaphragmatic Hernia and know the devastation, the joy and the struggle having a child in their lives who struggles to survive CDH. We cheer their triumphs, we worry and our tears fall with each family. It is hard watching others go through what you have gone through too. Sometimes our members need to take a break from it all - but there are always others to step forward and give encouragement. All of us with different backgrounds, some from other countries who join together with generous hearts and wholesome actions help.

And all of us together to bring Congenital Diaphragmatic Hernia Awareness TM to the world, one step at a time.

Saturday, November 24, 2007

Congenital Diaphragmatic Hernia AwarenessTM on MySpace

http://www.myspace.com/cdhawareness

If you are a MySpace user - and want to help support Breath of Hope www.breathofhopeinc.com and Congenital Diaphragmatic Hernia Awareness TM ~ please feel free to visit!

Thank you!

Wednesday, November 21, 2007


We are thankful for medical professionals who dedicate their lives to help our families. We are thankful to the Governors and States that have issued the Congenital Diaphragmatic Hernia AwarenessTM Day Proclamations. We are thankful for our supporters, members, friends, families, donors and most of all - our children.

Monday, November 19, 2007

Spreading Awareness on the Morning News!

One of our members, Despina, her dear husband and her smiling son, Mason were interviewed for this story - on how parents of NICU children are so Thankful for NICUs!
http://www.13wham.com/content/news/thismorning/story.aspx?content_id=ccf6baaa-6ad7-48dd-8c80-bd07f749b6e0

If you click on congenital diaphragmatic hernia - it links to http://www.breathofhopeinc.com/

This has made my Thanksgiving!

Sunday, November 18, 2007

Doing for Others is Immortal

What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. --Albert Pike

To give of yourself and sacrifice for others so that their troubles are less - is more rewarding than shopping for a new electronic component or clothing. When we give, we gain and we in turn contribute to community and society to make it better.

Saturday, November 3, 2007

Congenital Diaphragmatic Hernia AwarenessTM ~ How to Help!

If you want to help, go to our website at www.breathofhopeinc.com

There is a tab that will take you to Awareness information. We have a sample letter and Sample Proclamations to send to Mayors and Governors. Please note that we have had the following states Proclaim March 31, 2008 Congenital Diaphragmatic Hernia Awareness DayTM:

Mississippi
Iowa
Virginia - to be issued in January 2008
Maine
New Hampshire - to be issued in the coming weeks
Missouri
Nebraska
Pennsylvania

We have also had the following cities:

Charlotte, North Carolina
Cincinnati, Ohio

Please don't think you can not help if your state or city is listed - this is going to be an ongoing grass roots effort! I am even starting in my area to coordinate events and activities to be done so more people are AWARE! Each person I speak with - is aware now! Raising awareness can be a slow process - but if we all ban together to do this - it WILL be done.

Tony - this is for you - I would be happy to send you the documents - please contact us at:

cdhawareness@breathofhopeinc.com or elizabeth@breathofhopeinc.com

Thank you!
Every Breath They Take Is Our Breath of Hope

Just Do It....And we ARE!

You are to become a creator, not a competitor; you are going to get what you want, but in such a way that when you get it every other man will have more than he has now. --Wallace Wattles

I liked this. Several ideas for Breath of Hope have been created - and that is the intent to push forward with our written materials, our published materials and spread Congenital Diaphragmatic Hernia AwarenessTM.