Buy A Shirt - Pay for a Night!

Do you have $16? Do you want a snazzy new t-shirt? You know you do - would you like that purchase to help CDH Families?

Parker's House is expecting 5 families over the next few months - and Parker's house gives families (and their dogs too) a place to stay FREE OF CHARGE.

Orders until May 31 - that is the deadline!

Map of Congenital Diaphragmatic Awareness Day Proclamations Issued

States colored Turquoise issued Proclamations for March 31, 2008 and/or March 31, 2009.

We will also be working on a Bill to go through Congress to have March 31 to be the National Congenital Diaphragmatic Hernia Awareness Day.

States will each year have to have requests - if you would like to have a Sample Letter and Proclamation, please email us at cdhawareness@breathofhopeinc.com

If you know a Senator or a member of the House of Represenatives who will help us by sponsoring the Bill, please also contact us at the above email address!

Our goal is to turn this whole map Turquoise!

Every Breath They Take Is Our Breath of Hope...

Congenital Diaphragmatic Hernia Awareness Day - March 31, 2009 - In the News!

Link to the Presentation at Saint Louis Children's Hospital today:

http://www.ksdk.com/news/health/story.aspx?storyid=171206&catid=9

(Grab a box of tissues!)

Link to story in Charlottesville, Virginia's Daily Progress

Another amazing article featuring Tiffany ^Cadan's^ Mommy http://www.whig.com/printerfriendly/tiffany-frericks---MON

Associated Press Stories today:

http://www.bnd.com/336/story/711244.html

http://www.google.com/hostednews/ap/article/ALeqM5gkL_zzDl9RzIfJneI8nxx2PyDQzgD97987E00

And a Blood Drive today in Indiana

CDH Families, doctors, nurses are amazing!

There is no foot too small - to leave an impact on this world!

Tennessee 2009 Congenital Diaphragmatic Hernia Awareness Day Proclamation

2009 Congenital Diaphragmatic Hernia Awareness Day Image

Available now at Breath of Hope's Cafepress Store http://www.cafepress.com/breathofhope

Quotes On Hope...

We must accept finite disappointment, but we must never lose infinite hope.

-Martin Luther King Jr

Many of the great achievements of the world were accomplished by tired and discouraged men who kept on working.

-Dale Carnegie

Each time a person stands up for an ideal, or acts to improve the lot of others,Or strikes out against injustice, they send forth a tiny ripple of hope … and crossing each other from a million different centres of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.

-Robert F Kennedy

Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.

-Lin Yutang

We should not let our fears hold us back from pursuing our hopes.

-John F Kennedy

People once considered that religions were obsolete and that material science would solve all human problems. Now, they have become disillusioned with materialism and machinery and have realised that spiritual sciences are also indispensable for human life.

-Dalai Lama

"Hope is not blind optimism. Its not ignoring the enormity of the task ahead or the roadblocks that stand in our path. Its not sitting on the sidelines or shirking from a fight. Hope is that thing inside us that insists, despite all the evidence to the contrary, that something better awaits us if we have the courage to reach for it, and to work for it, and to fight for it....Hope is the bedrock of this nation--the belief that our destiny will not be written for us, but by us. By all those men and women who are not content to settle for the world as it is--who have the courageto remake the world as it should be. Together, ordinary people can do extraordinary things."

- Barack Obama

Hope -- Hope in the face of difficulty. Hope in the face of uncertainty. The audacity of hope! In the end, that is God’s greatest gift to us, the bedrock of this nation. A belief in things not seen. A belief that there are better days ahead.

- BARACK OBAMA, speech, 2004 DNC Convention

How Can YOU Make A Difference?

When a parent tells someone their child has congenital diaphragmatic hernia and explains the condition – people say “I’m sorry”. (We don't want their sympathy.) When they explain that their state, city or area has issued a Proclamation and March 31 is Congenital Diaphragmatic Hernia Awareness Day – people take notice. After all, if the state thinks it is important enough to have a day – they need to be made aware.

In order to promote public awareness of congenital diaphragmatic hernia and encourage research efforts to one day successfully treat all those diagnosed with this birth defect we must make sure each state is aware. It starts, as it has with each and every state. If you would like to write your Governor we can provide you some sample documents as guidance for this task. Please email cdhawareness@breathofhopeinc.com

You write your Governor or Mayor of your city and tell your story and request March 31 be proclaimed as Congenital Diaphragmatic Hernia Awareness Day. A day the residents learn more about congenital diaphragmatic hernias and support those who are affected.

We still have parents coming to us that have never heard about this birth defect, until they were diagnosed. This effort is to educate the public, our governments and the world.

Last year there were 31 states that issued Proclamations declaring March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day – we would like to see all 50 in this nation declare March 31, 2009 as Congenital Diaphragmatic Hernia Awareness Day.

Worldwide Children's Memorial Day

We wanted to Promote the World Wide Candle Lighting on December 14, 2008 - Compassionate Friends started this amazing event - always the second Sunday in December. Please light a candle at 7 PM your time and extinguish it at 8 PM so our angels will see the ring of light around the world.
http://www.compassionatefriends.org/News_Events/Worldwide_Candle_Lighting.aspx

BREATH OF HOPE MAKES A DIFFERENCE!

Dear Mrs. Doyle-Propst and Breath of Hope Day of Caring Volunteers,

On behalf of the patients of the University of Virginia Children's Hospital, please accept our most sincere thanks for you donation of the handcrafted memory kits of the Newborn Intensive Care Unit for our littlest patent's first hand print. I cannot tell you how special your gifts are to the families who receive these lovely treasures!

We realize that much time has gone by and I am extremely sorry for my long delay in sending our acknowledgments. Please know that we have not forgotten your kind hearts!

Your group has created such a special and unique keepsake and this is an exceptional gift for our patients' families to receive. We are truly grateful for all the time and effort that you have put in to help our babies and their families.

As always, your contributions help families get through the most stressful and difficult periods of their lives. Your hand print kits create a special way for families to honor and treasure their children.

Please share with all those who have been involved in this effort how much the staff and families value everyone's generosity and thoughtfulness. We greatly appreciate your involvement and aid. We are grateful for your compassion and community spirit ins supporting the families and their children at the University of Virginia's Children's Hospital!

Sincerely,

Kimberly A. Garofalo
Volunteer Coordinator
UVA Children's Hospital

Quote...

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

CDH Study Group

This http://cdhsg. net/ web site is designed as a resource for the Congenital Diaphragmatic Hernia Study Group. The CDH Study Group has over 50 centers that submitting data to this database that is run by Kevin P. Lally, MD. The Wisconsin coordinator monitors the NICU census daily.

Breath of Hope and the United Way Day of Caring

This is the 17th Annual United Way Laurence E. Richardson Day of Caring in Charlottesville, Virginia. It is an opportunity for local charities to receive volunteers to help with many things that may not get done due to limited manpower. Local businesses have their employees volunteer to help with anything from office work to landscaping.

Breath of Hope has signed up to receive volunteers on Wednesday, September 17, 2008 who will be assembling Infant Hand Print Kits which will go to the University of Virginia Children's Medical Center NICU. Families who have a baby at UVA's NICU will receive a hand print kit to keep as a treasured memory of their little one's first days on earth. UVA has approximately 450 infants admitted to their NICU each year we will be assembling 500. Of those kits, 50 will be used for Breath of Hope's Expectant Parent Care Package which has always included a hand print kit for these special babies.

Added to this - 17 others will learn of the congenital diaphragmatic hernia birth defect and may spread the word to many others too.

Hopeful Parents Anxiously Await Birth of Baby with Birth Defect - Congenital Diaphragmatic Hernia

An amazing Mom, Tiffany, who is expecting a CDH baby in November contacted her local paper and they ran a wonderful article today which appeared on the front page. Now that is spreading awareness!

The Quincy Herald Whig article by Kelly Wilson

http://www.whig.com/story/news/congenital-disorder---SUN

Absolutely wonderful article - Kelly Wilson did an awesome job!

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

________________

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

____________________________________________________________________

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

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

Promoting Earth Day Awareness

Everyone is now using totes for their groceries! No more plastic at Whole Foods here in the US! Plus the great thing about these totes - you get more groceries and they don't bust open like plastic and even paper do!

So if you are looking for a new Tote to add to your collection - please consider this one - Breath of Hope supporting Earth Day! Both great causes!

$13.99 at http://www.cafepress.com/breathofhope

Very heavy canvas tote with a very cool ORIGINAL Earth Day Graphic!

Why Breath of Hope Exists

Current statistics state that 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. Cystic Fibrosis occurs in 1 in 3,000 live births in the United States, and Spina Bifida has an occurrence of 7 in 10,000 or 1 in 1,478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida, although congenital diaphragmatic hernias occur just as often, with fatal results. Currently there is no other organization giving the support needed to those affected by the congenital diaphragmatic hernia birth defect, until now. © March 2007