August 19 - A Day of Hope...

Many people don't want to talk about an infant that died.  It is sad thing, but for the parents, grandparents and their sisters and brothers they do remember the joy, the hope and the beauty of that child who was theirs.  These are miracles too and no one should be ashamed or embarrassed to talk of these amazing miracles who blessed this world for a short time. 

On August 19 - it is a day of Hope and a day to remember and speak of these amazing angels.

Please feel free to visit here and be proud to display these beautiful photos in honor of these children and their families.

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!

Requesting Funds for Congenital Diaphragmatic Hernia Research & It Will Raise Awareness Too!

One of the most amazing people we know, Shannon, has taken on running in the New York City Marathon on November 7, 2010.  Twenty-six miles representing congenital diaphragmatic hernia awareness through the City of New York.  This marathon is the marathon that all want to run.  They say crossing that finish line in Central Park is like no other accomplishment they ever experienced. 

The New York City Marathon also attracts runners from all over the world, media from all over the world and spectators!  Every cent raised by the runners on TEAM GCDH NYC Marathon will go to Dhreams - Diaphragmatic Hernia Research & Exploration.  The runners are doing this for these children, families and to prove something to themselves - that they can reach from within and accomplish this without quiting - after all, these children are not given that choice.

Your donations are tax-deductible and every cent raised helps!   You can donate at the link above for TEAM GCDH NYC Marathon to any runner or any of the organizations and indicate that the funds are to the NYC Marathon for CDH Research!

Shannon - thank you - and all the other runners too!  Global CDH - thank you for this opportunity and may we all help raise some awareness and some funds for congenital diaphragmatic hernia medical research!

July 10th - Zumba for Congenital Diaphragmatic Hernia Awareness!

Thank you Sara (Joey's Mom) for organizing this event!

Quote about Pediatric Medicine...

"These are tiny humans. These are children. They believe in magic, they play pretend, there is fairy dust in their IV bags and they cross their fingers and they make wishes and that makes them more resilient than adults. They recover faster, survive worse. they believe. In Peds, we have miracles and magic and in Peds, anything is possible." ~ Grey's Anatomy

The "Doers" of Congenital Diaphragmatic Hernia Awareness

It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood who strives valiantly, who errs and comes up sort again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who at the best, knows in the end the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those colds and timid souls who knew neither victory nor defeat. - Teddy Roosevelt

This quote reminded me of not only the work we do to help families, we give them hope and follow their stories each different.  As parents we don't always have the answers, we are lost, we stumble and then we also learn.  As an organization we have learned along the way and we keep moving forward.  We have had some great victories with Congenital Diaphragmatic Hernia Awareness Day and educated many and many more are out there to educate.  It doesn't end with Resolution 204, it will continue until we can have not only the Senate issue a resolution but the House too - and the President sign it - to make March 31 a day we all celebrate that we raise awareness each and every day.

The quote above also reminds me of the health professionals and researchers who are on the front lines trying to overcome this birth defect.  Searching for better treatments, sometimes they are frustrated along the way.  Half of their patients die after fight valiant fights.  If they fail - they fail while daring greatly.  In their failure is also victory.  Each and every CDH case gets us one step forward.

Wishes all Fathers a Happy Father's Day!

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around.  But when I got to be twenty-one, I was astonished at how much he had learned in seven years.  ~Mark Twain, "Old Times on the Mississippi" Atlantic Monthly, 1874

Dad, you're someone to look up to no matter how tall I've grown.  ~Author Unknown

My father used to play with my brother and me in the yard.  Mother would come out and say, "You're tearing up the grass."  "We're not raising grass," Dad would reply.  "We're raising boys."  ~Harmon Killebrew

He didn't tell me how to live; he lived, and let me watch him do it.  ~Clarence Budington Kelland

Breath of Hope is listed as a "Circle of Care" Donor

From Saint Louis Children's Hospital 2009 Annual Report.  Please view the middle row - Breath of Hope is listed as a "Circle of Care" Donor. 

Breath of Hope is an organization that supports Medical Research which will assist in furthering the care of Congenital Diaphragmatic Hernia.  We are not medical researchers, we are parents who run a very efficient nonprofit organization.  Less than 18% of all revenue is used for Administrative costs.  We continue to help support Medical Research and put funds to work to do this. 

Breath of Hope Named to a List of Top-Rated Nonprofit Organizations

June 2, 2010

Breath of Hope has been named to a new list of top-rated nonprofits by GreatNonprofits, the leading provider of user reviews for nonprofit organizations.

The top-rated Women'e Empowerment nonprofits list is composed of organizations that have received at least ten positive reviews from stakeholders, such as volunteers, donors, or clients. Breath of Hope has received seventeen of reviews to date.

The reviews were posted as part of the Women's Empowerment campaign conducted by GreatNonprofits, in partnership with Guidestar and a coalition of nonprofit organizations. “We are gratified to be able to honor Breath of Hope for its work on congenital diaphragmatic hernia issues,” said Perla Ni, CEO of GreatNonprofits. “They deserve to be recognized for the support they have from their community of stakeholders.”

The entire list of top-rated Women's nonprofits is available at http://greatnonprofits.org/reviews/issues/women/_.  This list can be used to find great nonprofits to support with your giving, volunteering, and patronage.

About the Campaign

The campaign was hosted by GreatNonprofits, Guidestar, and a coalition of other nonprofit organizations.
The success of the campaign and the diversity of organizations reviewed reflect the core of GreatNonprofits’ mission to bring visibility, transparency, and accountability to the sector and allow nonprofits to engage with their community in a different way.

All reviews appear on GreatNonprofits.org as well as GuideStar.org, the premiere source for donor research on nonprofits. Nonprofits with 10 or more positive reviews during the campaign are included on the GreatNonprofits Top-Rated Women's Nonprofits list.

Media Contact:
Elizabeth Doyle-Propst
elizabeth@breathofhopeinc.com
 888-264-2340

Memorial Day 2010

For love of country they accepted death...  ~James A. Garfield

Death leaves a heartache no one can heal, love leaves a memory no one can steal.  ~From a headstone in Ireland

The brave die never, though they sleep in dust:
Their courage nerves a thousand living men.
~Minot J. Savage

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Please remember this Memorial Day weekend, with the BBQs, Pool Openings and celebrations - is also a time to remember all those who gave their lives for the freedom we enjoy every day.  Freedom comes with a price and many sacrificed their lives.  Many families endure separation and many of them need to be honored and respected for their service.