Doctors, Families Rally for Cure for Deadly Birth Defect

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

Thursday, October 30, 2008


Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Wednesday, October 15, 2008

Pregnancy & Infant Loss Awareness Day

Today is Pregnancy and Infant Loss Awareness Day ~ we wish to honor all babies and their families and promote Remembering Our Babies.
Tonight light a candle at 7 PM - if you extinguish it at 8 PM there will be a continuous wave of light through the time zones of the world.

Saturday, October 4, 2008

GoodSearch for Research

Breath of Hope, Inc. launched its Congenital Diaphragmatic Hernia Awareness® Campaign in July 2007. Members of Breath of Hope’s support forum, their families and the general public made March 31, 2008 the first Congenital Diaphragmatic Hernia Awareness Day™ in thirty-one states. This successful event gave those affected by CDH an arena to share their stories with their communities and speak for those who could not.

The Congenital Diaphragmatic Hernia birth defect has been affecting infants since the 18th century. Until the Congenital Diaphragmatic Hernia Awareness® campaign, no other efforts had been made to educate the general public about the severity of this birth defect. The first time many families became aware of the defect was at an ultrasound appointment.

Awareness brings funding for research and better treatment for the condition and/or birth defect. Take a look at the Breast Cancer Awareness Campaign and see how it has evolved. Because of the efforts of those affected, everyone sees a pink ribbon and thinks about breast cancer. Through their pink ribbon campaign, many companies now donate a portion of their profits to Breast Cancer Research.

The Turquoise Ribbon represents the Congenital Diaphragmatic Hernia Awareness® Campaign for Breath of Hope. It is not teal, it isn't pink or blue – it is Turquoise. The symbolism behind that color and stone clearly support these children, families and the health professionals out there who care for them. The Turquoise stone has been around for centuries. Congenital Diaphragmatic Hernia has also been around for centuries and has been found in Egyptian Mummies.

Just ten years ago the frequency in pregnancies of CDH was 1-3500 to 5000 and it was considered rare. Today, the frequency is 1-2000 to 2500 – Breath of Hope stands by the 2000 because many of those figures do not include pregnancies that resulted in stillborn, miscarriage or were heartbreakingly interrupted. We consider those babies as part of our statistics, giving a truer reflection of the entire picture.

Breath of Hope encourages research for this devastating birth defect. To assist in furthering research, Breath of Hope will fundraise and donate funds to the medical researchers who need money to continue their efforts. Any donation earmarked for research, will be forwarded to these researchers. The Board of Directors of Breath of Hope, Inc. recently approved the donation of funds to Johns Hopkins where a surgeon is painstakingly researching lung growth. The lungs are the key for these unborn, just born and growing children.

GoodSearch for CDH Research:

  • Breath of Hope has established an Endowment Fund for Medical Research of Congenital Diaphragmatic Hernia.

  • Breath of Hope pledges all Funds generated through GoodSearch for Breath of Hope will go to this Fund and then will be redirected to Medical Research.

  • Any Funds Donated to Breath of Hope earmarked for Research will also be added to this Fund.

One day we hope our awareness efforts will further government funding for research, increase in the survival rate and improve the lives of congenital diaphragmatic hernia families.

We encourage other organizations that support Congenital Diaphragmatic Hernia families and research to use the turquoise ribbon as well.

We ask you to join our mission.

To GoodSearch for Breath of Hope - see the bottom of the blog for a GoodSearch GoodShop link to take you directly to the GoodSearch Page. Or go to the page and choose Breath of Hope - Charlottesville, VA - start searching or shopping. You can also check on our progress throughout and see how much will go to funding Medical Research efforts for Congenital Diaphragmatic Hernia!

If you do Internet Shopping - GoodSearch has many retailers which will donate a percentage of your purchase (at no cost to you) to Breath of Hope and it will in turn fund Medical Research for Congenital Diaphragmatic Hernia.