National Congenital Diaphragmatic Hernia Awareness Day

On June 24, 2009, S.RES.204 Title: A resolution designating March 31, 2010, as "National Congenital Diaphragmatic Hernia Awareness Day". Sponsor: Sen Vitter, David [LA] (introduced 6/24/2009) Cosponsors (None) Latest Major Action: 6/24/2009 Referred to Senate committee. Status: Referred to the Committee on the Judiciary. LINK HERE

The text of this document has not changed much from the original Breath of Hope, Incorporated submitted to Senator Vitter LINK HERE

Please feel free to email us at boh@breathofhopeinc.com or cdhawareness@breathofhopeinc.com if you would like to use our sample letter as a guideline to write your State Senator.

CDH Medical Research Study

Baylor College of Medicine

Daryl A. Scott, MD/PhD

Mail Stop: BCM 227

One Baylor Plaza

Houston, TX 77030

E-mail: dscott@bcm.tmc.edu

http://www.bcm.edu/genetics/?pmid=11041

Dr. Scott and researchers in his laboratory are working to identify the genes that cause CDH. A brief description of his research can be found at http://www.bcm.edu/genetics/facultyaz/scott.html. Families interested in learning more about participating in genetic studies aimed at identifying the genes that cause CDH can contact him via e-mail at dscott@bcm.tmc.edu.

Happy Father's Day from Breath of Hope

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 the old man had learned in seven years. - Mark Twain

By the time a man realizes that maybe his father was right, he usually has a son who thinks he's wrong. - Charles Walsworth

I cannot think of any need in childhood as strong as the need for a father's protection.

- Sigmund Freud

When a father gives to his son, both laugh; when a son gives to his father, both cry.

- Jewish Proverb

A PHONERAISER FUNDRAISER

Want to help us raise funds without spending anything? No cost to you - just a bit of time - as much or as little as you want to give!

We will be collecting used cell phones, i-phones - even if they are broken and ink jet cartridges (size of your hand, please)! Keep them out of our landfills and Breath of Hope will have them recycled to continue to support CDH Families!

The economy is still in a rut - this is a way you can donate without it cutting into your budget! You can collect them at work, church, baseball, soccer or any other youth type event! Meanwhile you can spread some CDH Awareness! It is a guarantee someone will ask you what CDH is!

We are not asking for donations of funds - but of something others might just throw away and it is not safe for cell phones or ink jet cartridges to go into our landfills! They pollute the water, air and soil. So - you will be helping the environment AND helping a fundraiser!

If you want to help - please contact us at cdhawareness@breathofhopeinc.com

We have Press Releases, promotional emails you can send or letters to businesses or others. We have a price list and we have a donation receipt you can print off and give to those who request it!

How do you send them once you have collected them? A shipping label will be given to you - it costs you nothing! Please not just one or two phones - at least 5 or more collected - we don't want this business to pay $8 for one phone shipped to them!

You call the shipper and they pick up and take it away! It is that simple!

Please contact us at cdhawareness@breathofhopein.com if interested in helping us raise awareness, funds and recycle items that would otherwise pollute the environment!

Regards,
Breath of Hope

Proverb & Quotes...

"A wise man makes his own decisions, an ignorant man follows the public opinion."

- Chinese Proverb

"Faith is the substance of things hoped for, the evidence of things not seen."- The Bible

"Don't give up. Don't lose hope. Don't sell out." - Christopher Reeve

BREATH OF HOPE SCHOLARSHIP AWARDS PRESS RELEASE

NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY

Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them. - Ralph Waldo Emerson

Text from the Draft of the Resolution/Bill for National Congenital Diaphragmatic Hernia Awareness Day:

Supporting the goals and ideals of a National Congenital Diaphragmatic Hernia Awareness Day to raise public awareness and understanding of The Congenital Diaphragmatic Hernia Birth Defect and to foster understanding of the impact congenital diaphragmatic hernia has on patients and future generations of their families.

_______________________________________________________________________

IN THE SENATE OF THE UNITED

STATES

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RESOLUTION

Supporting the goals and ideals of a National Congenital Diaphragmatic Hernia Awareness Day to raise public awareness and understanding of the congenital diaphragmatic hernia birth defect and to foster understanding of the impact congenital diaphragmatic hernia has on patients and future generations of their families.

Whereas congenital diaphragmatic hernia (known as “CDH”) is 1 of the most prevalent life-threatening birth defects in the United States, is a severe, often deadly birth defect that has a devastating impact, in both human and economic terms, it affects equally people of all races, sexes, nationalities, geographic locations, and income levels;

Whereas congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 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 1,800 live births with the congenital diaphragmatic hernia birth defect. Countless additional friends, loved ones, spouses, and caregivers must shoulder the physical, emotional, and financial burdens congenital diaphragmatic hernia causes;

Whereas congenital diaphragmatic hernia which there is not a genetic indication, or anything that could predict this birth defect other than ultrasound during pregnancy there is no consistant treatment or cure, is a leading cause of neonatal death in the United States;

Whereas fifty percent of those patients that do survive the congenital diaphragmatic hernia birth defect have residual issues, causing a severe strain on pediatric medical resources and on the delivery of health care in the United States;

Whereas proactive diagnosis and appropriate management of fetuses with congenital diaphragmatic hernias minimizes the incidence of emergency situations, dramatically improving survival rates;

Whereas neonatal medical care is one of the most expensive care in the United States and congenital diaphragmatic hernia neonate stays average of sixty to ninety days in intensive care, costing millions of dollars, utilizing blood from local blood banks and requiring the most technically advanced medical care;

Whereas congenital diaphragmatic hernia is a birth defect that causes damage to the lungs and the cardiovascular systems, patients may have long-term sequele such as respiratory insufficiency, gastroesphgeal reflux, poor growth, neurodevelopmental delay, behavior problems, hearing loss, hernia recurrence, and orthopedic deformities;

Whereas the severity of the symptoms, outcomes and results of congenital diaphragmatic hernia and the limited public awareness of the birth defect cause many patients to live with substandard care and forego regular visits to their physicians or to avoid following good health management or therapeutic management which would help avoid more severe complications when in the future and compromises the quality of life;

Whereas people and families who have chronic, life-threatening diseases and birth defects or care for those who do, similar to congenital diaphragmatic hernia have a predisposition to depression and its resultant consequences due to their anxiety over pain, suffering, and premature death;

Whereas the Senate and taxpayers of the United States desire to see treatments and cures for disease and would like to see results from investments in research conducted by the National Institutes of Health (NIH) and from such initiatives as the NIH Roadmap to the Future;

Whereas congenital diaphragmatic hernia is a verifiable example of how collaboration, technological innovation, scientific momentum, and public-private partnerships can generate therapeutic interventions that directly benefit congenital diaphragmatic hernia sufferers and their families, save billions of Federal dollars under Medicare, Medicaid, and other programs for therapies, early intervention and increased survival rates;

Whereas improvements in diagnostic technology and the expansion of scientific knowledge and management of care of congenital diaphragmatic hernia have increased the survival rates in some of these cases, there needs to be more research and awareness of this birth defect to increase the funding needed give a better quality of life to those who survive and more optimism to the families and health care professions who work with these children first hand;

Whereas there are thousands of volunteers nationwide who are dedicated to expanding essential research, fostering public awareness and understanding of congenital diaphragmatic hernia, educating congenital diaphragmatic hernia patients and their families about the disease to improve their treatment and care, providing appropriate moral support, and encouraging people to become organ donors; and

Whereas these volunteers engage in an annual national awareness event held during the month of March and more specifically the 31st Day of March, and such a month or day would be an appropriate time to recognize National Congenital Diaphragmatic Hernia Awareness Day:

March 31st therefore, be it Resolved, That the Senate—

(1) designates the day of March 31, as ``National Congenital Diaphragmatic Hernia Awareness Day'';

(2) supports the goals and ideals of a national day to raise public awareness and understanding of congenital diaphragmatic hernia (known as ``CDH'');

(3) recognizes the need for additional research into a cure for congenital diaphragmatic hernia; and

(4) encourages the people of the United States and interested groups to support National Congenital Diaphragmatic Hernia Awareness Day through appropriate ceremonies and activities, to promote public awareness of congenital diaphragmatic hernia and to foster understanding of the impact of the disease on patients and their families.

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RESOLUTION

Supporting the goals and ideals of a National Congenital Diaphragmatic HerniaAwareness Week to raise public awareness and understanding of Congenital diaphragmatic hernia and to foster understanding of the impactCongenital diaphragmatic hernia has on patients and future generations of their families.

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