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!

Breath of Hope is listed as a "Circle of Care" Donor

From Saint Louis Children's Hospital 2009 Annual Report.  Please view the middle row - Breath of Hope is listed as a "Circle of Care" Donor. 

Breath of Hope is an organization that supports Medical Research which will assist in furthering the care of Congenital Diaphragmatic Hernia.  We are not medical researchers, we are parents who run a very efficient nonprofit organization.  Less than 18% of all revenue is used for Administrative costs.  We continue to help support Medical Research and put funds to work to do this. 

$5,000 GoodSearch Giveaway - Three Days Only!

GoodSearch will donate a $1 for every toolbar that is downloaded between April 6th at 9am EST and April 9th at 9am EST up to $5,000!! Please download the toolbar right now by following this link - (see below for instructions on how to create a link to your customized toolbar download page)

Our new toolbar is free to download and allows you to raise money for our cause CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS---Every breath they take is our ~BREATH OF HOPE~ every time you search or shop online! Once added to IE or Firefox, each time you shop at more than 1,300 stores (from Amazon to Zazzle!) a percentage of your purchase will automatically be donated to CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS---Every breath they take is our ~BREATH OF HOPE~ at no cost to you (and you may even save money as the toolbar provides coupons and deals as well!). The toolbar also has a search box and each time you search the Internet, about a penny is donated to CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS---Every breath they take is our ~BREATH OF HOPE~ http://www.breathofhopeinc.com/

Please hurry and do this now so that we can earn the $1 bonus per toolbar!

And, please pass this along to all of your friends. The two minutes it takes to add this toolbar to your browser can make a lifetime of difference for our cause!

Get the toolbar NOW! http://www.goodsearch.com/toolbar/bre...

Please note: All funds raised through GoodSearch to Breath of Hope are redirected to Medical Research that will benefit congenital diaphragmatic hernia!

Medical Research Support Results

Another step forward in an effort to further the care of congenital diaphragmatic hernia infants has been accomplished!  Please read here.

This was an effort collaborated by a team from the Saint Louis Fetal Care Institute - Cardinal Glennon, SSM Saint Mary's Health Center and Saint Louis University.

Goodsearch for Research - Breath of Hope Toolbar

Did you know if you Goodsearch or Goodshop for your favorite charity they will receive about one cent for each search and a percent donated of the sale from the retailer you purchase from? And it costs you nothing! That is right - absolutely nothing. All you have to do is search or shop through GoodSearch/GoodShop.

And if you go here - to make it easier for you - you can download a Toolbar to do this for Breath of Hope! Last year we started a campaign where the proceeds raised from GoodSearch would go to CDH Research. GoodSearch for CDH Research - and we have given the proceeds to research that will benefit medical research of congenital diaphragmatic hernia.

So download the toolbar and when you do your on-line shopping or searching - you will benefit CDH Medical Research!

Cadan's Halloween Carnival - Fundraiser for Congenital Diaphragmatic Hernia (CDH) Research

This Sunday, October 25 from 2 PM through 6 PM if you are in the area - please go to this great event for kids and those who are kids at heart! Proceeds will benefit the Saint Louis Children's Hospital - Medical Research to help advance the care of infants born with congenital diaphragmatic hernia.

A great article about Tiffany, Rome and of course Cadan is here.

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.

Estimated Birth Rate of Congenital Diaphragmatic Hernia Worldwide

The world’s population low estimate is 6 billion. The world birth rate is about 20 per 1000 which would make the number of births every given year at 12,000,000. (You divide 6 billion by 1000 and multiply by 20.) So – with 12 million babies born every year in the world, if CDH has a rate of 1 in 3,000 – this would be 40,000 born with congenital diaphragmatic hernia in the world every day – again an estimate. (You take 12 million and you divide that by 3000 to get 40,000).


This means in ten years there are 400,000 infants born with congenital diaphragmatic hernia and the death rate for these children is 50% so 200,000 die in 10 years. (Multiply 40,000 by 10.)


Each day in this world approximately 109 babies are born with CDH. About 4 babies an hour are born with CDH in the world every day. (Divide 40,000 by 365 – days in a year you get 109.5… then you divide 109 by 24 – hours – and that is 4 rounded.)


Meanwhile, Muscular Dystrophy has a rate of 1 in 6,000 births for the congenital form of this disease. They have Jerry Lewis and a Telethon that earns 65 million dollars for research. MD deserves this funding and recognition.



So does congenital diaphragmatic hernia.

We just heard that the wonderful State of Kansas has proclaimed March 31, 2009 as Congenital Diaphragmatic Hernia Awareness Day. (Thank you Tanya!) We have a group of wonderful parents who will be going to Saint Louis Children's Hospital on March 31st. My employer - the location I work - will be having a Jeans Day Fundraiser for March 31 - and they don't know it be will be sporting Turquoise.

And - every breath these precious babies and children take is our Breath of Hope...

Congenital Diaphragmatic Hernia Medical Research - A Great Start!

At Breath of Hope, we have expectant parents join us and we offer them hope in the face of adversity. These families never stop amazing us all, the dedication they have to their children’s honor and memory. We have many families who do amazing things for the hospitals who helped their child. Most of all, they praise the care of those special nurses, therapists, doctors and staff. How can you possibly measure the dedication of those who work with us to help our children? You can’t. It is not measurable.

We have many survivors go home and share their smiles with us. We also have special angels who grace our hearts. Two precious angels over this last month or so were born and fought at Saint Louis Children’s Hospital in Missouri. Last year, we had nurses from their NICU contact us about getting ribbons and were amazed that we give our ribbons for free. We do this because in wearing a simple turquoise ribbon on your collar, someone may ask and the wearer will tell of Congenital Diaphragmatic Hernia – this is spreading awareness one step at a time.

Cadan Christopher and Ryann Hope blessed us with their short but ever so powerful lives. Both of their families requested donations to come to Breath of Hope and wished it would go to Medical Research that would help Congenital Diaphragmatic Hernia. We contacted one of the amazing nurses at Saint Louis Children’s to see if they were doing anything for medical research related to congenital diaphragmatic hernia. And we found that yes, indeed, they were working on it. If you view the Firstgiving Ticker for Medical Research you can see the running total that will be given to Saint Louis Children’s Hospital in Memory of Cadan and Ryann. We also have invited their families and the many families who have had children at SLCH to be there to present a check to Washington University School of Medicine which does the medical research for Saint Louis Children’s Hospital.

We would also like to acknowledge another special angel, Will, whose parents asked to donated to Children’s Hospital of Philadelphia or Breath of Hope. The funds raised for CHOP are going to Medical Research for Congenital Diaphragmatic Hernia. Will and his amazing parents started CHOP Medical Research for Congenital Diaphragmatic Hernia. The funds to Breath of Hope have purchased blankets and mittens for our Expectant Parent Packages and ribbons for our Awareness Day Campaign.

These babies – though angels – are actively still making a difference and having an impact upon this world.

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.

A Gift of Congenital Diaphragmatic Hernia Awareness for The Hard to Buy for!

This is shameless donation promotion but this is what we can do for you if you are stuck for a last minute gift. Donate (any amount) and we will be happy to email you an acknowledgment letter you can print off and place in an envelope for that hard to buy for person!

We can even email them if they are far away! The recipient of this "gift" doesn't know the amount you donated - just that you made a generous donation to a Public Charity in their name!

And you have the satisfaction of giving - two fold.

We can even provide exactly WHAT DONATIONS DO AT BREATH OF HOPE:

• Your donation of $10 will provide a grieving family with information to help them through this tragic life-changing event.
• Your 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.
• Your donation of $50 will more than cover one mailing at non-profit bulk rate of our Newsletter.
• Your donation of $100 will provide a Hospital or Medical Center with our printed materials to share with families.
• Your donation of $150 will help us provide 1000 awareness ribbons for friends, families, the medical community and the general public. Breath of Hope has always provided these free of charge to everyone.
• A donation of $25,000 will go towards our future Scholarship Fund for these children to have a college degree and future health professionals to one day work with families.

You can also request your donation go for Congenital Diaphragmatic Hernia Medical Research and we will be sure that it goes into that fund we forward to those doing Medical Research!

So quit scratching your head on what you are going to get that person you just can't figure out what to get - donate in their name - you will feel good - and so will they!

TODAY 5 BABIES WILL BE DIAGNOISED

This was originally researched, written and published in October 2007:

TODAY 5 BABIES WILL BE DIAGNOSED

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 thirty-three (133) 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.
3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2009 for Congenital Diaphragmatic Hernia Awareness Day!

When someone asks what it's for – tell them!

written entirely by Elizabeth Doyle-Propst 10/24/2007

The Promise of New Treatments to help Babies Still in the Womb

http://citizeneconomists.com/view_articles_detail.php?aid=145

This article was just published today, it states the following:

Spina bifida affects 1 in every 1,500 babies each year while CDH occurs in 1 of every 2,500. In the U.S., $230 million each year is spent due to CDH4. According to the Centers for Disease Control (CDC), $636,000 is spent for each baby born with spina bifida during their lifetime5. This is only a small fraction of the costs associated with the various diseases children can be born with. If the possibilities for stem and gene therapy come to fruition as many scientists believe they will, these costs can be reduced for both the families affected as well as the government.

Statistics of CDH from Accurate Sources...

Today, almost 5 families 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 thirty-three (133) 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.


Our world population as of 11/23/2008 is 6,738,684,582 taken from: http://www.census.gov/ipc/www/popclockworld.html


The birth rate can be as high as 30/1000 to 15/1000 and the birth rate has fallen in the United States over this last year. World estimated birth rate is 19.97 for every 1000 people and this figure was taken from: http://www.indexmundi.com/world/birth_rate.html


Now, if there are 19/1000 - for this year that would equal to: 6,738,684 births estimated in the world.

Congenital Diaphragmatic Hernia has a rate of 1/2000 pregnancies and perhaps 1/2500 births due to miscarriage and heartbreaking interrupted pregnancies. World birth rate for CDH would be 2,695.47.

Now if you take the World Population to see how many people have been affected by CDH - this would be estimated at 1,347,736 people - this is at a rate of 1 in every 5000. They could be family, friends of family or the actual baby affected. We have been contacted by people who just discovered by reading our information that they were born with CDH or the baby they had in the 1960s died of CDH. They have been told hernia that affected the lungs and then gradually put it together reading our information.


So this means that there are over a million out there in this world that have been affected by Congenital Diaphragmatic Hernia. Where are you? We need your help to bring this birth defect to the forefront in medical research and awareness. We need national Awareness Days in each country. We need newly expecting parents to have heard of this birth defect before they have their ultrasound. We need more people educated on a birth defect that still has overall a 50% survival rate. We better care for the children affected so they can continue to be the pioneers who help health professionals not just maintain their health but it improve so they can go forward and make more aware.

Awareness brings Medical Research which in turn increases the survival rates. Prime example of this is Breast Cancer Awareness - from this early detection has increased survival rates. The same will happen for congenital diaphragmatic hernia.

I'm Aware ~ Are You?

On Zazzle is a new shirt design by Breath of Hope:

I'm Aware ~ Are You? - this design can go on any shirt. On the front left pocket is the turquoise Awareness Ribbon with I'm Aware ~ Are You? - on the back of this shirt is part of this statement which started off Today 5 Babies will be diagnosed...

Our theory is that many people wait in lines and would read the back of the shirt while waiting and become aware of congenital diaphragmatic hernia.

There are also several other new items available on our Zazzle Store which has a link at the bottom of this blog.

Please be sure to Goodsearch and Goodshop to Zazzle and a percentage of the sale will go to our Goodsearch for Research program - 100% of all funds raised through Goodsearch will go to Congenital Diaphragmatic Hernia Medical Research.

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.

TODAY 5 BABIES WILL BE DIAGNOSED

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 thirty-three (133) 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.
3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2008 for Congenital Diaphragmatic Hernia AwarenessTM Day! When someone asks what it's for – tell them!

written entirely by Elizabeth Doyle-Propst 10/24/2007