Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Friday, June 25, 2010

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

Tuesday, June 22, 2010

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.

Saturday, June 19, 2010

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

Wednesday, June 16, 2010

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. 

Wednesday, June 2, 2010

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  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 as well as, 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