A Quote to Live By...

Never give in... never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force... never yield to the apparently overwhelming might of the enemy. ~Winston Churchill

Congenital Diaphragmatic Hernia Awareness Car Magnet Available

Extremely high quality - and the image is better and clearer than above. It took us several months to choose a vendor and these are perfect! They are rectangle 3 inches by 8 inches. These magnets don't take up much space but are a powerful impact!

As soon as we have a good picture of a one we will add it to the blog and website!

They are $2 each plus shipping! The buy Button is to the right of this page!

What Donations Do - Actions Speak Louder Than Words...

© Every Breath They Take Is Our Breath of Hope

The vision must be followed by the venture. It is not enough to stare up the steps -- we must step up the stairs. --Vance Havner

Many non-profit organizations will ask for donations. It is what sustains their existence. Few will tell you exactly what your donation does.

A donation of $10 will provide a grieving family with information to help them through this tragic life-changing event.

A donation of $15 will provide an expectant family with a blanket to wrap their CDH baby in as well as a hand print to keep as a memento of their child's first moments on earth.

A donation of $50 will more than cover one mailing at non-profit bulk rate of our Newsletter.

A donation of $100 will provide a Hospital or Medical Center with our printed materials to share with families.

A donation of $150 will help us provide 1,000 Awareness Ribbons for friends, families and the medical community. Breath of Hope provides these free of charge to everyone.

A donation of $25,000 will go towards our Scholarship Fund for these children to have a college degree, future health professionals to be and any one in the general public that wishes to further their education.

At Breath of Hope....

• We don't use an ad agency
• We don't use a Public Relations Firm
• We don't use a Marketing Firm
• We don't pay Executive or Professional Salaries
• We do our mailings in-house
• We don't rent mailing lists
• We mail at maximum discounted bulk non-profit rates
• We do our graphics in-house
• We are Tax-Exempt in the Commonwealth of Virginia and purchase office supplies without paying sales tax
• To maximize our expenses, we purchase office supplies using coupons, sales and reward certificates and utilize Good Search to get a percent back at the end of the year.
• Prizes are sponsored
• We virtually have no overhead
• Our Accounting is done in-house
• Most work is done by talented volunteers

Congenital Diaphragmatic Hernia AwarenessTM started with Breath of Hope's campaign to have each and every state in the US to Proclaim March 31 as Congenital Diaphragmatic Hernia Awareness® Day. This year we had 31 States. Governors and local officials all over the United States became aware of CDH. Senator Clinton became aware of CDH. In nine months we accomplished something no other had done before. We will continue to work towards a Perpetual Day that will recognize March 31 as a day to pause, reflect and learn of this birth defect that every week 5 families hear about for the first time. We want to change that fact.

Breath of Hope, Incorporated© 2008

In Rememberance - The Last Lecture - Lives on in All of Us

We can't change the cards we're dealt, just how to play the hand. --Randy Pausch

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From the Wall Street Journal

In his final months, while millions of people world-wide were watching his inspirational last lecture, Randy Pausch was cocooned at home in Virginia with his wife and three young children. "Every time I'm with the kids now, there's this total sense of urgency that I try not to let them pick up on," he told me. "I can't say things and reinforce them in four years. My time is now." The computer-science professor from Carnegie Mellon University, honored as one of Time magazine's 100 most influential people in the world, died at home Friday morning at age 47 of pancreatic cancer. MORE

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There is also a very touching video on that page. I received an email last fall when the Last Lecture was given at Carnegie Mellon University. I had meant to buy his book over the last months only it got away from me. Ironically I made the purchase on Thursday, July 24 - and he is now among the angels as of Friday.

I wish his family and friends peace in this trying time but know that he ignited the world with his words - never intending to. I guess his dreams just happened. Karma just came.

PRESS RELEASE / ANNOUNCEMENT - BREATH OF HOPE RECEIVES GRANT FROM GMAC FINANCIAL

We are pleased to announce that Breath of Hope, Inc. has received a grant from GMAC Financial. This grant is for an Endowment Fund to award scholarships to people attending colleges and universities with an interest in raising awareness, developing treatment options, increasing the survival rates, and giving our children born with a congenital diaphragmatic hernia ("CDH") a better quality of life. Scholarships will also be available for survivors of CDH.

Breath of Hope wants to give back to those who further our cause. We want to help them with their education so they will be able to lessen the residual affects that plague families affected by CDH.

Thanks to the generosity of the public, Breath of Hope has generated enough funding to cover our operational expenses for this year. Breath of Hope keeps it's operating expenses to a minimum and by doing so, we have maintained enough funding to set aside and start this fund.
This generous grant from GMAC Financial will further the education of those children born with CDH, as well as people who are interested in increasing awareness, treatment and knowledge of the congenital diaphragmatic hernia birth defect.

Breath of Hope is currently creating a Scholarship Committee that will review the applications and help contact colleges and universities to get the word out that there will be awarded scholarships for the 2009-2010 year.

If you have knowledge of any available grant programs which you would like Breath of Hope to apply for, or if you would like to contribute to this scholarship fund, please contact Elizabeth Doyle-Propst at Elizabeth@breathofhopeinc.com or 888-BOH-CDH0 (888-264-2340).

Leadership is...

Leaders are more powerful role models when they learn than when they teach. --Rosabeth Moss Kantor

Caring, Spreading Awareness and Capturing Memories

On Wednesday, September 17 - Breath of Hope will have a project with the Thomas Jefferson Area United Way for the Day of Caring. We will assemble 500 baby hand print kits. Fifty of the kits will be used for our Expectant Parent Packages we send families of Breath of Hope along with a few other items which help these families prepare for their CDH baby.

The University of Virginia Children's Medical Center NICU has approximately 450 infants admitted each year. The remaining and bulk of these kits will be delivered to the University of Virginia's NICU so each family that has a baby admitted will have this special memento of their child's first moments.

A Community Grant will help fund the materials needed for these hand print kits and once that is finalized we will formally thank the corporation.

Each family will also know that Breath of Hope and the United Way Day of Caring made these hand prints possible. This will also spread a bit of Awareness!

Inspired by Some Great Purpose

When you are inspired by some great purpose, some extraordinary project, all your thoughts break their bounds. Dormant forces, faculties and talents become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be. --Pantanjali

Very inspirational video at this link:

http://www.msnbc.msn.com/id/21134540/vp/25568850#25636841

Breath of Hope is Now A Carepages Affiliate

http://www.carepages.com/breathofhopeinc

Breath of Hope, Inc. Helps Patients, Families and Friends Stay Connected with New CarePages.com Services

CarePages.com facilitates communications and emotional support that studies show contribute to better patient experiences and outcomes


Charlottesville, Virginia -- Breath of Hope, Inc. now offers patients, their families and friends free access to CarePages.com, healthcare’s largest social network to provide the emotional support needed for healing and well-being.

CarePages.com enables those involved in a health event to create private, Web sites for sharing health updates, photos and supportive messages. CarePages.com also has resources to help people cope with the emotional challenges of a health event, including inspiring stories, tools to meet others in similar situations, and practical tips and advice on “what to do” and “what to say” during difficult and stressful situations.

With this new service, Breath of Hope, Inc. is in the forefront of a growing trend among public charities that support families and friends to improve the overall patient experience by recognizing and meeting their emotional needs. A recent survey of nearly 900 caregivers and visitors to patient CarePages found that more than 92% said they would like to see healthcare providers be more proactive in providing emotional support.

In addition, several clinical studies have concluded that emotional support can have a positive effect on the healing process. For example, an article in the Joint Commission Journal on Quality and Safety (December 2003), reported that emotional well-being has been shown to be predictive of survival and functional independence among older patients.

“CarePages helps Breath of Hope, Inc. move forward on one of our key priorities—increasing patient well-being and overall patient and family satisfaction,” said Elizabeth Doyle-Propst, CEO “It’s very easy to use, since we’ve integrated CarePages.com with our own Web site http://www.breathofhopeinc.com/ and other services.”

“Breath of Hope, Inc. recognizes that communication and personal interactions can transform health events into more positive experiences for all participants,” said Eric Langshur, CEO, CarePages, Inc. “CarePages has helped millions of patients connect on a deeper level with their families, friends and other caregivers, and we are proud to welcome Breath of Hope, Inc. into the CarePages community.”

In addition to giving patients and families emotional support, CarePages.com makes it easy for patients and families to recognize Breath of Hope, Inc members who have provided superior levels of care. The service also gives them the opportunity to support Breath of Hope, Inc.

CarePages.com is secure and compliant with all HIPAA requirements. It ensures that patients, families and healthcare providers are protected online through strict privacy policies, password-protection and visitor management tools for CarePage Managers.

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About CarePages, Inc.

CarePages.com is the first site dedicated solely to helping people cope with the emotional difficulties caused by a health event. Millions of CarePages.com members have used its free, patient-centric Web pages to communicate and connect with each other, plus its unique resources to guide them through the experience. In addition, customized CarePages are offered by nearly 700 U.S. and Canadian healthcare facilities. CarePages, Inc. is part of Revolution Health Group LLC, whose goal is to help consumers make informed choices and put them in control of their health decisions through the cornerstone of its efforts – RevolutionHealth.com. Together, these services address both the emotional and informational health care needs of its members. For more information, please visit http://www.carepages.com/.

Congenital Diaphragmatic Hernia Rare? Or Not?

I was astounded earlier this month when I was watching our local CMC Telethon to raise funds for the local Children's Medical Center. I wasn't in awe of the funds raised - something hit me hard. They featured a baby who was still in the NICU there but on his way home and he was recovering from a congenital diaphragmatic hernia. Now that wasn't what hit me. I know that there are at least 20 in the city I live who have had children with CDH. I know that we have members of the Breath of Hope Yahoo Group that live in the same town, some within driving distance of one another for a "normal commute".

What struck me was they referred to the congenital diaphragmatic hernia birth defect as "rare". Rare? I don't think so.

In March 2007, Stacy and I researched the statistics out there and we wrote the following which is copyrighted material:

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 – 3,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics) this translates to approximately 1800 live births of the congenital diaphragmatic hernia birth defect per year. Cystic fibrosis, which occurs in 1 in 3,000 live births in the United States and spina bifida, which has an occurrence of 7 in 10,000 or 1 in 1478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida although congenital diaphragmatic hernia occurs just as often, with fatal results.
[© 2007-2008]

In 1999, when I was pregnant with my daughter the statistics for CDH stated it occurs 1 - 3,500 - 5,000. Has the occurrence increased? The birth rate really hasn't but the occurrence of CDH in pregnancies appears to have increased. Yet, we have broadcasts (granted the media) stating that congenital diaphragmatic hernia is "rare".

The survival rates of infants born with congenital diaphragmatic hernia is still generally the same too - 50% - and this is what may make it rare - that there are half the children who have had this birth defect each year surviving and growing up into our society. This is what makes it rare - the survival rates!

In almost ten years - the survival rates even with the gentle vent technique and various drugs that are now approved to use for these infants to overcome Pulmonary Hypertension. This must change. There is research looking at genes of the parents, child and siblings. There needs to be more research in developing treatments so that more and more of these children survive. Further this more research to develop plans to help these children who might have reflux, failure to thrive, eating issues, scoliosis and chronic lung issues.

It is not a rare birth defect. It is a rarely survived birth defect - based solely upon the numbers of approximately 900 each year.