Breath of Hope - Member Organization of NORD

The Board of Directors of NORD has accepted Breath of Hope as a Member Organization.  NORD is a unique federation of organizations that share a common interest in helping people with rare diseases. These organizations have learned that they speak with a louder voice when they work together, even though their individual missions may differ in specific details.

NORD member organizations share the benefit of representation in Washington, DC, through the efforts of NORD's Vice President for Public Policy in its Washington office. They also receive frequent briefings from NORD on political and medical news, as well as guidance on topics related to accomplishing their organizational goals.

To view a list of current organization members with direct links to their websites, click here. (We just received notification via email today and are not currently listed but will be soon.)

Breath of Hope's Holiday Auction for CDH Awareness

Starting on Friday, November 26th through December 10 Breath of Hope will be holding an online auction Fundraiser through Bidding for Good. 

Items up for auction include U2 Tickets to a concert of your choice, Lady Gaga Tickets to a concert of choice, Restaurant.com Gift Certificates (wonderful item to have on hand to give as a gift or use yourself).  Also up for action will be a Super Bowl Package, March Madness Final Four Package, A Trip for 2 for the Country Music Awards next November, Hot Air Balloon Rides Package and Top Gun - Fighter Pilot Experience for One Package.  There are also many Art items, sports collectibles and more being added next week! 

Proceeds to benefit our organization during tough economic times.  We have not cut programs but it has been a very lean year.  We are also offering gift cards to top referrals - so please feel free to log in and refer your friends and family! 

Click here to preview, donate or sponsor:  Breath of Hope's Holiday Auction for CDH Awareness

We would like to thank Berry Web Designs for sponsorship!

Thank you!

Congenital Diaphragmatic Hernia Documented for 300 Years?

Congenital Diaphragmatic Hernia has been recorded for over 300 years, but no one has ever heard of it, unless they encounter it. 

Congenital diaphragmatic hernia (CDH) was first described in 1679 by Lazarus Riverius who incidentally noted a CDH on a postmortem examination in a 24 year old.   

Citation:  The CDH study group and advances in the clinical care of the patient with congenital diaphragmatic hernia Nora M Doyle, Kevin P Lally Seminars in Perinatology - June 2004 (Vol. 28, Issue 3, Pages 174-184, DOI: 10.1053/j.semperi.2004.03.009)

In 1701, Sir Charles Holt described the classical clinical and postmortem findings of an infant with CDH in philosophical transactions of the Royal Society of London.   

Citation: Weblink here 

Author: Daniel S Schwartz, MD, FACS, Assistant Clinical Professor of Cardiothoracic Surgery, Mount Sinai School of Medicine; Chief of Thoracic Surgery, Huntington Hospital
Coauthor(s): Jason M Johnson, DO, General and Laparoscopic Surgeon, Department of General Surgery, William Beaumont Army Medical Center; Sidney R Steinberg, MD, FACS, Program Director, Department of General Surgery, Spartanburg Regional Healthcare System; Consulting Surgeon, Department of Surgery, WG Hefner Veterans Affairs Medical Center Contributor Information and Disclosures

Updated: Jun 12, 2009

And:

In 1848, Victor Alexander Bochdalek, a professor of anatomy in Prague described both right and left posterolateral CDH. To this day, CDH commonly is referred to as a Bochdalek hernia in honor of Victor Bochdalek's contribution to this field.  Citation:  Weblink here

Not to dispute the findings and severe health crisis which HIV and AIDS has presented in this world, but in the last 20 years, the advances of care and maintaining health for those affected by HIV has evolved not to be a death sentence.  First reported in the 1980s in the United States Citation Here:  WebLink here

Congenital Diaphragmatic Hernia (CDH) has been reported, studied, evaluated, researched for the last 300 years and still to about 50% of those diagnosed overall it is a death sentence? A death sentence before their 1st birthday.

Everyone is aware of HIV, even those who have never directly encountered it.  Not everyone is aware of CDH, only those who have directly encountered it.  This needs to change. 

The only way this can change is if we make our Government officials and the general public aware that CDH has been reported, diagnosed and treated for 300 years but no one is aware.  If you would like to make your local, state or federal Representatives aware, educate the general public, take a hour of your time and write them.  Request a sample letter and proclamation/resolution by contacting us at cdhawareness@breathofhopeinc.com, we will gladly send you the documents to do this.

Only when they are aware, when the general public becomes more aware will there be more research in order to bring the survival rates higher.  When more are aware they will fund medical research for this birth defect.  More will realize that survivors of CDH need specialized care and therapies early in order for these children to maintain health.  Until we start with the first step, no one will listen.  The first step is our elected officials and the general public.

It just is not acceptable for 300 years, CDH has been documented and the survival rates are still over all at 50%.

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." - Margaret Mead

2011 Faces of CDH Calendar & Breath of Hope's New Logo

The 2011 Faces of CDH Calendar is now available on Cafepress.  If you go to this link - please consider going to Goodsearch - Good Shopping - a percent of your sale will go to Breath of Hope!  The calendar comes in two sizes 17X11 for $19.99 and 11 X 8.5 for $16.99, both make excellent gifts!

Also today is the LAST DAY for FREE Shipping on all orders over $40.00 - the coupon code is NEWSHIP40

Click here to go directly to the Breath of Hope Cafepress Site - if you shop from Cafepress the prices are slightly more!

We are always honored by all the families who send in the photos of these amazing children.  It truly is their faces that make these calendars so perfect!  Thank you!

Each Day 5 Infants are Diagnosed with CDH

Today almost 5 families in the United States alone will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.

Thirty-five (35) families a week. One hundred fifty (150) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.

It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies. The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.

What can you do to help save these babies? What will help these families? What can you do to make a difference?

1. Learn about congenital diaphragmatic hernias.
2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2010 for Congenital Diaphragmatic Hernia Awareness Day! When someone asks what it's for – tell them! Or wear it every day!  (Many of us do!)

written entirely by Elizabeth Doyle-Propst 10/27/2007
_____________________

Copyrighted - Breath of Hope Inc. - if you wish to use this - you can - just site the source!

Wave of Light - Pregnancy and Infant Loss Awareness Day - October 15th

On October 15th it is International Pregnancy and Infant Loss Awareness Day.  On this day, please light a candle at 7 PM in your time zone and you can extinguish it at 8 PM.  This will create a continuous  wave of light around the world for the little angels to see from heaven.

For more information - click here

2nd Annual Cadan's Halloween Carnival - CDH Research Benefit!

If you are in the Illinois area - this is an awesome family event!  All proceeds raised will go to Saint Louis Children's Hospital to benefit research to benefit congenital diaphragmatic hernia. 

More details are on Facebook - click here

Thank you!

Faces of CDH Calendar for 2011

We are taking photos for the Faces of CDH Awareness Calendar for 2011, this is the fourth year we have produced this calendar. Please send pictures to pictures@cdhawareness.org by October 15, we will provide a consent form. 

Below are samples from our calendar this year.  These make great gifts for under $20 and are wonderful to give friends, family and doctors or your favorite nurse.

Thomas Jefferson Area United Way Day of Caring - Giving that Gives Back

Since 2007, Breath of Hope has participated in the Thomas Jefferson Area United Way's Laurence Richardson's Day of Caring.  Each year, in September, the Central Virginia's United Way coordinates hundreds of projects for other nonprofits and schools in the area and provides thousands of volunteers to help.  It is the time of year, other nonprofits and schools look forward to receiving volunteers to complete projects they otherwise could not have done without the human power required.

In the summer or 2007, I heard a radio advertisement requesting nonprofit organizations contact our United Way to obtain the volunteers needed for projects for one day.  We knew there was a project that we could untilize volunteers but we also wanted a project which would give back to the community.  Breath of Hope had been supplied infant hand print kits for our Expectant/New Parent Packages by individual Board Members and myself.  We had found a wholesaler which we could purchase these kits for approximately $5 each.  We knew we could assemble them using containers and paris of plaster for less than $5 each.  In fact, the total cost per kit with labels, ziplock bags and instructions are at a cost of about $1.25 each, far less than the cost we were paying.

We also had all our printed materials reviewed and edited by the University of Virginia's NICU staff lead by Robert Sinkin, MD and felt we should give back to them.  On average, 450 infants are admitted each and every year at the NICU there.  Today, a hand print kit is supplied to each and every family who has their baby admitted there.  The remaining are used in Breath of Hope's packages and we have had extra to help send to Project Sweet Peas Projects around the country.

This year we had an amazing group of volunteers from CFA Institute and Banana Republic of Barracks Road come and learn about congenital diaphragmatic hernia, Breath of Hope and help us assemble another 500 hand print kits.  And they see the results which we provide the UVA NICU.  We know that families throughout the area benefit from these simple kits.  We also know the staff at UVA's NICU enjoy giving this small token to families in order to capture their child's first days here on earth.

We thank the volunteers, the Thomas Jefferson Area's United Way (Shaele Wood should receive a metal for her coordination each and every year), PRA International for providing the space to complete this project and the UVA NICU for the inspiration, help and assistance to complete this project for three years.

Next year will be the 20th year of the United Way Day of Caring here in this area.  Twenty years of helping other nonprofits and organizations have volunteers provided so they can help others.  By giving, you give and get and it is returned,

We would also like to promote a wonderful Printer we used this year - their service and quality are amazing!  With very short notice we were able to get our labels and they went over and above the call of duty!  Lepin' Lizard Labels - order your labels from them - they are less than any others we have used and their service is amazing!

Two Days Left - Bidding Ends September 15th at 11 PM ET

ONLY 2 Days Left to Bid!!!

The Breath of Hope, Inc Auction closes on September 15, 2010 at 11:00 PM EDT. If you've got your heart set on a special item... you still have time to win! Check Out These Great Buys... You can still bid on any of the special items in our auction right up to the final seconds of this exciting event. Every tick of the clock brings us closer to the finish line. This may be your last chance to win that special item or to grab a great bargain. So don't miss out... BID NOW! Spread the Word! Remind your friends the end is almost here! Just Refer your Friends so they have the chance to offer their support and get some great last-minute deals. Don't Forget: Every bid supports the work we do at Breath of Hope, Inc! View All Auction Items Items still available! View All 73 Items Katherine in Dusk The Katharine Book Bag is about simplicity. Whether you are carrying a romance novel or a school book, this bag will let you do it in style. Its reversible sleek design allows you to get two looks for the price of one. The zippered pocket allows ... Donated by: Jennifer Zaranis Value $36.00 Current Bid $12.00 Brew Central 14-Cup Coffeemaker ¿ 14-cup coffeemaker ¿ Fully automatic with 24-hour programmability for "wake-up" coffee ¿ Brew-pause; coffee-ready indicator; auto shut-off; simple push-button controls ¿ Gold Tone filter, charcoal water filter, and instruction book included ¿ Me... Value $185.00 Current Bid Bid Now! Viva Las Vegas!, Las Vegas A Trip for Two to Las Vegas, Nevada for Four Days & Three Nights at the Luxor with Economy Class Air, Including Shared Round Trip Airport Transfers and an Evening Helicopter Ride over the Strip Come revel is the glamour and glitz of Las Vegas! Fr... Value $2,600.00 Current Bid Bid Now! Donate a Mile in the NYC Marathon 2010 Each runner is required to raise $2,500 in order to participate, this means that each mile they run will be worth $100. Donate for one mile - all proceeds raised will go to the Dhreams Research Program at Columbia University to further genetic re... Donated by: Breath of Hope Value $100.00 Current Bid View Item View All 73 Items

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Breath of Hope, Inc

PO Box 6627 Charlottesville, VA 22901
Ph: 888-264-2340
http://www.breathofhopeinc.com/