7th Annual Congenital Diaphragmatic Hernia Awareness Day 2014

Since 2007, Breath of Hope launched the first campaign for congenital diaphragmatic hernia awareness.  We were taking a risk, we had no idea how it would do or how it would be received by our supporters or the general public.  That first year we had 34 states and hundreds of localities issue Proclamations/Resolutions to those who requested them.  All we asked for is a picture or scan of the document.  The document is the for those who make the request to keep. 

Many used their Proclamations to have events, contact their local media and write their local papers to educate their communities on congenital diaphragmatic hernia.  It is a platform given to tell your story.  Each year we continue to have friends and family write their Governors to request March 31st be proclaimed Congenital Diaphragmatic Hernia Awareness Day™.  

In 2010, The United States Senate passed a resolution for March 31st to be Congenital Diaphragmatic Hernia Awareness Day™, with many thanks from our supporters and a few special supporters who had connections.  

March 31st is not a day we chose lightly.  It was a day which at that time, we knew of no other CDH child to have been born or chose wings.  It was a day at that time we chose to make special.  The turquoise ribbons was chosen for the symbolic reasons, it is a neutral color and anyone can find turquoise or teal in their wardrobe to wear.  

If you would like the documents to request your State, city or community proclaim March 31, 2014 as Congenital Diaphragmatic Hernia Awareness Day™, please email us at cdhawareness@breathofhopeinc.com - we will provide the documents and answer any questions you have!  

If your Governor and Mayor are not newly elected, you can send your requests in now.  If your Governor or Mayor was elected in the last election, please wait until their inauguration before sending the requests addressed to them.  You may also be able to make this request on-line or through email. 

5th Annual Congenital Diaphragmatic Hernia Awareness Day 2012

We want to thank all of our supporters for wearing their turquoise, writing their Mayors, Governors, Congresspeople, having a walk or run, making amazing food for this event and having fun.  It is to celebrate our endurance, our strength, our children's and grand children's strength.  To endure this CDH Journey and each is different, is a huge endeavor.  We also want to thank you all for remembering the angels who blessed this earth for a time too short for us.

We will continue to feature a Face for CDH - please feel free to send in your photos and a short bio or your whole story and we will feature your child here.  Putting a face to CDH makes a huge difference! Email cdhawareness@breathofhopeinc.com

We will also have some volunteer opportunities coming up within the next few weeks to focus more on community get togethers and also next year's 6th Annual CDH Awareness Day!

Again - thank you all!

The President of the United States: Pass a Resolution for March 31st to be CDH Awareness Day

For the last 5 years we have diligently promoted Congenital Diaphragmatic Hernia Awareness Day - March 31st.  In it's inception, we never expected the overwhelming response we received from parents, family and those who truly knew how devastating CDH is on the family who helped to support our endeavor.  Our ultimate goal has been to have one day dedicated to Congenital Diaphragmatic Hernia Awareness, to raise awareness, funds for support and to honor those who continue the fight and remember those brave souls who fought a great fight too.

We realize that each year, writing your Governor and your Mayors for your areas to Proclaim March 31st as Congenital Diaphragmatic Hernia Awareness Day is consistently a constant task.  We also know that sometimes in one state, another new family will step up and this gives them the opportunity to receive the Proclamation and the amazing feeling they have when they hold that amazing document!  There is a sense of empowerment and achievement!  All we ask for is a photo of the document - you keep it! 

We also are going to push forward, we want the President of the United States to sign a Perpetual Resolution, we want all of Congress both the US Senate and the House of Representatives to pass the resolution to make March 31st that day.  A day we reflect, remember, rejoice, celebrate and make all aware of the amazing families affected by CDH.

We have again created a new Petition which will send an email to your Representatives in Congress and to the President to make this day happen.  We are seeking at least 5,000 signatures.  We are asking anyone who would like to push this further and personally call their Representatives to contact us for the sample letter and sample Resolution.  We also ask anyone who would like to turn their State Turquoise for CDH Awareness Day 2012, to contact us for a Sample Letter and Sample Proclamation to contact us too.  Making it personal does help further this cause!

Please feel free to go to this link here at Change.org and sign and you can contact us at cdhawareness@breathofhopeinc.com to get the sample documents.

Thank you for all you do everyday to help educate the public, further awareness of this birth defect.  We still have a long way to go but we are making progress!

Make Congenital Diaphragmatic Hernia Awareness Day 2011 in Your Area!

Every day you live you project congenital diaphragmatic hernia awareness.  Sometimes you do this silently and sometimes very vocally.   You always are aware and you wish all others would be too.

A parent of a child who is surviving this birth defect, your child does something you never thought they would do when they were in the NICU and it brings you to tears.  “I never thought my child would ever color like others”.   You savor every moment and you fear every turn that maybe you will wake from this dream and it will become a nightmare again.

As a parent of an angel who fought valiantly and chose wings, you see signs in the butterflies that land on your nose or the rainbow that suddenly fills the sky when you are at your bluest blue.  Still these babies can make our heart soar.  You savored each moment and treasure your memories.

Both know the real normal is just a setting on the washing machine.  Both were shocked at the news that their infant had this birth defect that when laid out seemed bigger than they would ever be but they both fought like warriors we read of in novels.  That alone makes us pick up and move forward, telling our stories to make others aware.

You tell others to educate them that congenital diaphragmatic hernia happens just as often as spina bifida, cystic fibrosis and congenital muscular dystrophy.  Others have heard of those and know of them but few have still heard of CDH.  Many dismiss it as a “hernia” and ignore the simple fact that still today over all the survival rates are 50%.  You know that 1800 families each year have their child diagnosed just as you did.  You know the fear, helplessness and hope these families go through each and every moment.  You know what they will face.

This is why each year we ask our states and localities to issue a Proclamation for March 31^st to be Congenital Diaphragmatic Hernia Awareness Day.  It is a day to celebrate.  It is another day to add to our own children’s birthday or birthday and angel day.  It is a day to have our government officials to acknowledge that this birth defect still needs more education, awareness and more research to improve the survival rates, to lessen the residuals survivors and their families endure.  We need more families to burst into tears when their child jumps for the first time because they once thought they never would.

Each year, more and more people are becoming aware – and it is because of the families who take an hour of their time to sit down, edit a letter and mail it with a sample proclamation and perhaps pictures of their own child.  You then will receive this astounding document an acknowledgment that government works for the people, by the people and for you.  You hold this tangible piece that states you made others aware that may never have been otherwise.  

Please contact us at cdhawareness@breathofhopeinc.com for a sample letter and proclamation, we will be happy to send them to you and ask all you do, is send us a photo or a scan of the document when you receive it!  When at times you have felt powerless in this journey with congenital diaphragmatic hernia, you have the power to do this!