Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Monday, May 31, 2010

Memorial Day 2010

For love of country they accepted death...  ~James A. Garfield

Death leaves a heartache no one can heal, love leaves a memory no one can steal.  ~From a headstone in Ireland

The brave die never, though they sleep in dust:
Their courage nerves a thousand living men.
~Minot J. Savage

And I'm proud to be an American,
where at least I know I'm free.
And I won't forget the men who died,
who gave that right to me.
~Lee Greenwood

Please remember this Memorial Day weekend, with the BBQs, Pool Openings and celebrations - is also a time to remember all those who gave their lives for the freedom we enjoy every day.  Freedom comes with a price and many sacrificed their lives.  Many families endure separation and many of them need to be honored and respected for their service.

Monday, May 24, 2010

Zumba Fitness For Congenital Diaphragmatic Hernia Awareness!

Gigi Hill - Fundraiser for Entire Month of June

One of our fantastic Moms is doing a fundraiser for Breath of Hope for the entire month of June.  Fifty percent of all sales will go to Breath of Hope.  Great gifts for women - bridal showers, birthdays or just because - or maybe a new spring bag for yourself!  Please go here to purchase!  If you would like to host a party please feel free to contact Jennifer at

Wednesday, May 19, 2010

Jaxson's Jog - Fundraiser in Pennsylvania for CDH

Jaxson's Jog is a 10K & 5K Run plus a 2.5 Mile Walk in Support of Children with Congenital Diaphragmatic Hernia (CDH).  Your registration makes a difference!  All proceeds benefit Global CDH.

Summary of Race Details:
  • REGISTER online today, click here (note: registration says 1 mile walk, but it is 2 miles)
  • Race date: Saturday, May 22, 2010
  • Race location:  North Park Boat House, Allison Park, PA 15101
  • Race day registration from 7:30 am - 9:30 am
  • 10K and 5K Race begins at 10 am; walkers follow
  • Registration Fee: $20 for adult runners/walkers, $10 for youth (18 or younger)
  • Course Info: For 5K course, click here; for 10K course click here
  • Hotel: Holiday Inn Pitt North is offering a special rate of $79 - click here for details
  • Stick around for the post-race festivities - awards and Chinese raffle
Follow Jaxson's Jog on Facebook:
To make an online donation to Global CDH in the name of Jaxson's Jog, click here.
There are lots of ways to help – sponsor or make an individual donation, register as an individual or a team to run/walk, or make an in-kind donation of food or gift for the Chinese raffle.   I hope you will strongly consider supporting the families and children with Congenital Diaphragmatic Hernia by participating in Jaxson’s Jog!

Happy Birthday Jaxson!  We hope your day is wonderful!

Monday, May 17, 2010

2010 Congenital Diaphragmatic Hernia Summit

Will be in Philadelphia, Pennsylvania from June 23 - June 27.  For more details please go to this link with the most complete and up-to-date information - LINK

We want to thank Peace Frogs Travel / Outfitters, Chief Frog, Julie Arbelaez for her tremendous help with the hotel rooms, conference rooms and breakfast(s).  If you have travel needs, please consider them - here is the link.

Sunday, May 9, 2010

Happy Mother's Day


To all mothers - mother's of these amazing children - both the angels and the earthly angels, grandmothers and great-grandmothers out there too!

Being a full-time mother is one of the highest salaried jobs... since the payment is pure love. ~Mildred B. Vermont

Mothers hold their children's hands for a short while, but their hearts forever. ~Author Unknown

Mother love is the fuel that enables a normal human being to do the impossible. ~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

A mother's love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking ~ Helen Rice

A mother is someone who dreams great dreams for you, but then she lets you chase the dreams you have for yourself and loves you just the same. ~ Unknown

The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh

Friday, May 7, 2010

Congenital Diaphragmatic Hernia Summit - Philadelphia, PA

(Organizations in Alphabetical Order – more are welcome!)
Breath of Hope, The Children’s Hospital of Philadelphia, Global CDH,
Parker Reese Foundation, Project Sweet Pea

June 23 -24 2010 – Sheraton Hotel, Philadelphia, PA

To reserve your hotel room at a special rate of $129.00/night ($100 discount)
(Copy and paste the following link into a web browser)

You can also call the Sheraton at 1-888-627-7071, please mention the Breath of Hope Block (50 rooms)

The Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia coordinating Speakers for June 24 and/or 25

Dhreams Research Presentation – Julia Wynn

Presentation by Willie Skaggs, Councilor – How to best deal with friends and Family – who just don’t understand - open session for families to get ideas and strategies

June 23 – would be introductions … The Organizations all represented will have time to do presentations.

June 24 – (currently open)

June 25 – 10 AM – Dhreams – Presentation and description of Genetics and their study. There also will be forms there and possibly a certified phlebotomist to take blood samples for those who would like to participate.

June 26 – Visit to the Philly Zoo - the oldest Zoo in the United States – we are working on a group/discounted rate we will need a RSVP in order to reserve this at discounted rates and a possibility of having access to more attractions – such as a Swan Boat Ride or Pony Rides! to let us know if you want to attend!

June 27 – 
The Children's Hospital of Philadelphia's Center for Fetal Diagnosis and Treatment's Fetal Family Reunion - or those traveling and who want to take advantage of the room rates through the Breath of Hope Block – please feel free! We will provide water and drinks through the conference sessions and are hoping to provide breakfast and possibly a dinner or lunch.

Thursday, May 6, 2010

Saturday, May 1, 2010

Alex had a Lemonade Stand - Breath of Hope wants a Birthday Bash

Spread a little awareness every day and why not have a bake sale?  Or even a cookout and collect donations?  If you work - bring goodies in and accept donations in exchange.  Breath of Hope's Birthday is May 17th - all fundraisers are appreciated and to further this incentive a gift certificate will be awarded to the person who raises the most funding by July 31, 2010.  The proceeds collected - 50% will go to the programs and services Breath of Hope provides and 50% will go towards medical research.  If you have questions, need ideas - please feel free to contact us at