The Frontline for Hope

A new series is featured Saturday nights at 6:30 on KSDK NewsChannel 5 titled The Frontline for Hope featuring patients, families and the doctors, nurses and staff at Saint Louis Children's Hospital.  The first episode premiered Saturday, March 16 and is now available for all to view on line.  We recognize many of our families and the amazing staff in Episode 1.  < Click on Episode 1 to take you to the website and view but before you do, grab a box of tissues!  

Thank you to those that put this together! 

6th Annual CDH Awareness Day - Week

After Breath of Hope established itself as a public charity, we had to find our nitch in the CDH Community and we came up with the idea of launching the first ever CDH Campaign for Awareness by establishing a Congenital Diaphragmatic Hernia Awareness Day in 2007.  March 31st was chosen because at that time, we had no CDH angel or survivor who was born on that date nor became an angel on that day either.  We didn't want to take away from special days of those children and families.  We did discover, quite by accident that one story of a child published in the newsletter, the child's birthday was indeed March 31st.  It was not intentional at all.  We thought at that time it was just something that we meant to be.  We sent out that Newsletter with ribbons and our announcement.  Our Board of Directors had already sent in requests to their respective states.  Iowa was the first State to Issue a Proclamation for March 2008 - the whole month to be Congenital Diaphragmatic Hernia Awareness Month.  Thirty-four states followed issuing Proclamations for March 31st to be Congenital Diaphragmatic Hernia Awareness Day. 

This year, March 31st is on Easter Sunday and in an effort not to infringe upon the religious holiday we are sending requests to have the last week in March (25th - 31st) to be Congenital Diaphragmatic Hernia Awareness Week.  This also gives family and friends more opportunity and flexibility to plan local events!  If you would like to send a request to your Governor or Mayor or locality, you can go to our website here and download the documents or if you have difficulty doing this, contact us at cdhawareness@breathofhopeinc.com, we are happy to send you this information!  We have already had one Proclamation received and we only request you send us a picture or scan of the document via email. 

We also have a Facebook Event you can join here and we are giving ideas on how to celebrate Congenital Diaphragmatic Hernia Awareness Week.  If you plan an event in your area, please let us know and we will help promote.  All funds raised for the month of March 2013 will go into our Research Fund which has a balance from March 2013 of $1,380.00. 

We also have started a Petition to have the White House turn Turquoise a day or the week of Congenital Diaphragmatic Hernia Awareness.  Here is the Petition and we must have 25,000 before February 6th to be considered, please sign and share here is the link!  Wouldn't it be amazing to see this image below or something similar? 

Please feel free to contact us (cdhawareness@breathofhopeinc.com) if you have any questions or would like us to help promote your event!  Thank you all always!

Kickin' some CDH Booty - Socks 4 Surgery!

There is a wonderful organization Socks 4 Surgery that provides socks for infants and children who are facing surgery.  These socks are to inspire, bring smiles during an otherwise uncertain and fearful time.  Several of our families have received socks from this amazing organization and we have now received socks to provide in our Expectant/New Parent Packages (pictured above).  To keep the toesies warm and bring a smile to the families, nurses and doctors!  Thank you Socks 4 Surgery and all you do!  Providing hope and comfort in even little ways - it is immeasurable!  You can also follow them on their Facebook Page at this link:  Socks 4 Surgery Facebook

Fundraiser in Kasas City, MO - BOWLING for CDH!

One of our amazing families is hosting an event in Kansas City, MO in honor of their son Noah click on his name here to see his feature for our Faces of CDH!

You can meet other families, bowl, talk corvettes and CDH!  This event is family friendly and will benefit so many families affected by CDH!  Thank you!

Yes, it is early but we are hoping to get a jump on this project and are requesting photos of YOUR individual "Face of CDH" for our 2013 Faces of CDH Calendar.  These make wonderful gifts for under $20 and people do take notice of these calendars when hung in offices!  It gives the opportunity for people to raise CDH Awareness.

Please email your pictures to pictures@cdhawareness.org or elizabeth@breathofhopeinc.com (sometimes our email accounts become too full when we request pictures!  The best format is .jpg and we do ask that you sign a release so we can use your photos.  We want both CDH Heavenly and Earthly Angels, even ultrasound pictures if you would like to share your soon to be CDHer! 

We hope to have the calendar out in early November this year and deadline for submissions are November 2, 2012.

Thank you - always!

Dear Friend,

You have an exciting opportunity to help us make even more of a difference inour community. GreatNonprofits – a review site like Amazon Book Reviews or TripAdvisor – is conducting an awards campaign to identify the top-rated social justice nonprofits in the country.

Won’t you help us participate in the awards by posting a review of your experience with us? The awards deadline is October 31st, 2012. All reviews will be visible to potential donors and volunteers. It’s easy and only takes 2 minutes! Go to http://www.greatnonprofits.org/reviews/write/breath-of-hope-inc/campaign:social-justice-2012/

With your help, we can gain greater visibility in the community.

Thank you!

3rd Annual CDH Summit - You can View!

Our 3rd Annual CDH Summit in Colorado was amazing.  We have the following links to the "raw" presentations we had a live stream available for everyone to attend.  Thank you all who tuned in and please bear with these - new technology and we are all learning!  We hope to do this for all future summits too!  Nothing compares to being there and meeting the amazing speakers and other families.  Truly, there is healing and lifelong friends confirmed at these meetings!  No one goes away without a hug!

We would also like to thank each of those that presented information or their stories. 

Jason Gien, MD - Advancing the Care of Infants with CDH through Laboratory Research

                            Long Term Care for CDH Children

Susan Marshall, NICU Dietician - CDH Infants - Nutrition for the CDH Neonate

Elizabeth Doyle-Propst - Post Traumatic Stress Disorder - CDH Parents Experience

Katie Edic, 29 year old CDH Survivor - also in the above link video footage

Timothy Crombleholm, MD - Fetal & Pediatric Surgery, Surgeon in Chief-Children's Hospital of Colorado 

Julia Wynn, MS - Certified Genetic Counselor/Research Coordinator, New York Presbyterian Columbia - DHREAMS

Meaghan Russell, MPH, PhDc, Pediatric Surgical Research Laboratories, MassGeneral Hospital for Children and Anna Frangulov, Research Coordinator, Boston Children's - both with the Pediatric Surgical Research Laboratories for the CDH Study

We would also like to thank Amber Burton of Team Abel - Colorado Chapter of Breath of Hope and Eva Schaeffer who both helped to put together all the events and coordinated everything so well!  Your work is invaluable! 

3rd Annual CDH Summit in Aurora, CO

Our third annual summit will be held in Colorado this year.  The dates are:  Wednesday, June 27, Thursday, June 28 and Friday, June 29th.  Hotel reservations must be made by June 5, 2012.

Please sign up here so we can have an accurate headcount and below is the tentitve agenda:

Wednesday June 27th
9:30am-10:30am Dr. Jason Gien-CDH/PPHN Research Doctor for University of Colorado/Children's Hospital Colorado

11am-12noon Susan Marshall Dietician/Nutritionalist from Children's Hospital Colorado (CDH nutrional info followed by Q&A)

Lunch 12-1pm

1pm-5pm Museum of Nature & Science followed by dinner (we can pick a place and invite families to join us or families can do dinner on their own)

Thursday June 28th
9:30am-10:30am NICU social worker (Name TBD)

10:30am-11am Katie Edic, CDH survivor share her story.
11am-12noon Dr. Crombleholme Fetal Surgeon (This is still being confirmed so times may change) CROMBLEHOLME HAS BEEN CONFIRMED

12noon-1pm Dr. Jason Gien CDH Pediatrician specializing in following CDH children in clinic and long term effects/complications of CDH (this specific topic and time is flexible but it's very important to discuss the long-term care of CDH children)

4pm-8pm Family Dinner/Fundraiser at Cici's Pizza

Friday June 29th

9:30am-10:30am Liz McKelvey NICU Nurse (specialized with CDH babies followed by Q&A)

10:30am – 11:30am Dhreams Presentation (Columbia University) Julia Wynn

11:30am-12noon Fetal Maternal Center & NICU Tour

1pm Zoo (if not attainable, Cherry Creek reservoir picnic pavilion for lunch, volley ball, and fun for all)

**Butterfly release will be scheduled for one of these days!**

Updated May 21, 2012 – still working on details and there could be adjustments to the schedule.

Chili's Supporting CDH Research in NJ

Thursday, May 17, 2011 from 4 PM - 11 PM

you can present this flyer above to

HOLMDEL CHILI'S

2105 Highway 35, Suite 101

Holmdel, NJ (732) 671-2273

both dine in and take out orders will qualify for Chili's to donate 15% of the sales to Congenital Diaphragmatic Hernia (CDH) Research at The Children's Hospital of Philadelphia! 

Please feel free to share this and pass on to anyone you know!

Thank you!

Volunteers Needed!

We are looking for a few good men and women!

We need volunteers who can dedicate as little or as much time to Breath of Hope.

Main requirement – we would like you to be at least 1 year from your child either coming home from the NICU or the date they chose wings over feet.  We know  through that first year (and sometimes beyond) are still trying to gain their bearings from their experiences.  This stated, we will allow those who are within that year to assist with any of these positions.

Awareness Day Coordinators– we need folks to act as coordinators and distribute our letters, sample Proclamations and help others find their Representatives on-line or find their contact information.  These are slowly evolving positions.  Must have or be willing to learn the basic process of the requests and you will learn detail of how many states and our government work.

State/Regional Advocates – we have a detailed description of this position and it would be working with any Chapters formed and helping to get them started.  These volunteers would also be requested to organize a State/Local event each year so families could meet and great one another.  Of course this would overlap with other positions which also would work with the people who hold this position.  You would also be a go-to person for all local media and families so you can distribute information.

Scholarship Committee Representatives – Primarily would review scholarship applications and help award the scholarships.  Position would also have you research how to promote the Scholarship Program to those who qualify and ideas for fundraising and grants for scholarships. 

Grant Researchers – Individuals who would research for grants available for Breath of Hope to apply, we already have the paperwork to apply for grants.  We just need these individuals to send us the contact information to apply for grants.

Care Advocates and Coordinators – Individuals who can give information and contacts to families who are expecting, moving to other areas or may need practical information about hospitals, OBs, In-Home Nursing Companies, Grief Resources and any other resources that could be needed or required for families.  These individuals would also work with our State/Regional Reps to be sure if our printed materials are needed and/or desired are distributed. 

Editors – do you like to edit, read or reword things to make them clearer?  We would love your input!  To review our reference guides and brochures, website and our Newsletters when they are going to print or out via email.

Fundraising Coordinator – Someone who would help families fundraise for Breath of Hope’s Programs, Medical Research to benefit CDH and also assist families in fundraising for their own family expenses. 

Board Members – We need a few people to add to our Board of Directors!  These are “jacks of all trades” due to the simple fact that Breath of Hope is a smaller nonprofit public charity.  You will review financials, attend Board Meetings (most via teleconference – quarterly or if an issue arrises you may need to attend – not lasting longer than an hour).  Board Members over see all these positions and also are important in the day to day operations of Breath of Hope. 

None of these positions are paid – all volunteer and none are a full-time job unless you wish it to be one!   Family comes FIRST.  We know all too well that family is first.  Email us at boh@breathofhopeinc.com and we will send you an application, which is a formality.  We will also be working on with volunteers to create position descriptions.

Thank you!