Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Friday, October 23, 2009

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.

Wednesday, October 14, 2009

Wave of Light October 15 - Pregnancy & Infant Loss Rememberance Day


Please light a candle at 7 PM your time - extinguish it at 8 PM so the little angels will see the light traveling around the world in their honor - on their day - Thursday, October 15, 2009.

Tuesday, October 13, 2009

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

Oct. 25th, 2009 will be the first annual Halloween Carnival from 2-6 at the Knights of Columbus in Quincy, IL. There will be plenty of entertainment for both adults and children. All of the proceeds will go towards CDH research at Saint Louis Children's Hospital!

In Memory of a beautiful baby boy who has inspired so many - and will make an impact on the future of research of congenital diaphragmatic hernia!

Wednesday, October 7, 2009

2010 Faces of CDH Calendar Now Available


There are two sizes available and lots of beautiful Faces of CDH!

Great gift for relatives, friends, doctors, anyone you know you just don't know what they need! Everyone needs a calendar! (And under $20!)

http://www.cafepress.com/breathofhope.410812838 - $19.99

http://www.cafepress.com/breathofhope.407406393 - $16.99

http://www.cafepress.com/breathofhope/

Also note - these prices are good if you go to or through the Breath of Hope "Shop" - Cafepress sells them in the Marketplace for up to $25.00. (Yes we get our mere commission which is under $1 to $2 each but we want you to get as much savings in today's economy as you can!)

Also - there is a notice on the front of the shop with what was stated as an updated "coupon code" you can use for your order! Please let us know if the code does not work - sometimes these third party sites are a bit unscrupulous!

Interesting Quote ...

Who indeed can harm you if you are committed deeply to doing what is right? - I Peter

Friday, October 2, 2009

United Way Day of Caring - Hand Print Kits & Ribbon Assembly!

September 23, 2009 -

A huge thank you to the Thomas Jefferson Area United Way and the Volunteers who came from the University of Virginia Health Services Library who helped assemble 400 Hand Print Kits and about 1,000 Awareness Ribbons on Cards! Also many thanks to PRA International in Charlottesville who donated the Training Rooms as an area to have these volunteers help with these projects.

The Infant Hand Print Kits:


These will go to the University of Virginia's CMC Neonatal Intenstive Care Unit - all families who have a baby admitted at UVA's NICU receive one of these kits to capture their child's small hand print at birth. We also provide a kit in our Expectant / New Parent Packages for families who have a baby diagnosed with congenital diaphragmatic hernia.

Below are a few pictures of the amazing group assembling ribbons on cards.



They also featured their good work and they should here

Quotes by Ghandi on his Birthday...

Freedom is not worth having if it does not include the freedom to make mistakes.

I object to violence because when it appears to do good, the good is only temporary, the evil it does is permanent.

In the attitude of silence the soul finds the path in a clearer light, and what is elusive and deceptive resolves itself into crystal clearness. Our life is a long and arduous quest after the Truth.

It is unwise to be too sure of one’s own wisdom. It is healthy to be reminded that the strongest might weaken and the wisest might err.

Strength does not come from physical capacity. It comes from an indomitable will.

(The last one, I believe explains the amazing strength of these infants and children in battling CDH and their parents for loving them through the battles.)

Wednesday, September 16, 2009

Congenital Diaphragmatic Hernia Awareness - What it Takes

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. --Margaret Mead

Now go here and sign to send your Representatives an email letter (you can edit) supporting a National Congenital Diaphragmatic Hernia Awareness Day for March 31, 2010.


You can also email us to get a Sample Letter (you can also edit) and Sample Proclamation to send your State Governor and Mayor to have your state or city issue a Proclamation for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day in your area!
boh@breathofhopeinc.com

Friday, September 4, 2009

Community Congenital Diaphragmatic Hernia Awareness Campaign

Why focus in your community? Does everyone in the area you live know about CDH? With the Senate Resolution in Congress right now – there is a stepping stone to make them aware. Writing your Mayor, City Council Members, County Board and Governor to request March 31 to be Congenital Diaphragmatic Hernia Awareness Day is the first step. (Contact us if you want the sample letters to send!)

In March, I was amazed by how many within my area that had been affected by CDH but never knew – Awareness Day and the article that I was interviewed for motivated other survivors to contact us. Some were silent for a long time because they believed CDH was rare, when it truly isn’t.

In my area – Breath of Hope will be participating in the United Way Day of Caring on September 23, 2009. We will have volunteers help assemble handprint kits from tins, labels, Paris of plaster and some work to be donated to the University of Virginia’s Children’s Medical Center NICU. Each family will receive a handprint kit who has their infant admitted to the NICU there. The extra we assemble will go into our Expectant Parent Packages which we have distributed since 2006.

Next March we hope to have more events in my area – grocers who will donate their sales on March 31, a Walk/Run and a Wine Tasting is in the works.

What can you do in your area to help promote awareness of this birth defect? What stores do you visit? Would they go Turquoise for the Day? Hold a fundraiser to either benefit Breath of Hope or a local hospital? Would you like to assemble hand print or foot print kits for your local hospital? Now is the time to plan!

How about educating in your local schools? You can talk of the birth defect and make so many aware, children tell their parents (sometimes) about something new they learned. For older children – the legislative process of obtaining an Awareness Day might fall in line with Social Studies Teaching. How does a Resolution or a Bill become law? All sparked by a few determined parents who dared to make a difference.

If you need help, have ideas and need insurance for these events – please feel free to contact us. We have several documents to help promote your events and many ideas that might make it easier, more efficient and fun. We would be thrilled to help in any way we can to promote your community event. Awareness started at home – now spread it to your community!


Contact us at cdhawareness@breathofhopeinc.com or boh@breathofhopeinc.com

P.S. Is appropriate for this – because this was inspired by the events which the Parker Reese Foundation has listed out there for their fundraisers and events. We will of course try to work around their events but also when you are in other communities the dates and times do not infringe on one another. The more out there – the more we make others aware!

Sunday, August 16, 2009