Doctors, Families Rally for Cure for Deadly Birth Defect

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

Friday, April 20, 2012

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 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!

Sunday, April 1, 2012

5th Annual Congenital Diaphragmatic Hernia Awareness Day 2012

We want to thank all of our supporters for wearing their turquoise, writing their Mayors, Governors, Congresspeople, having a walk or run, making amazing food for this event and having fun.  It is to celebrate our endurance, our strength, our children's and grand children's strength.  To endure this CDH Journey and each is different, is a huge endeavor.  We also want to thank you all for remembering the angels who blessed this earth for a time too short for us.

We will continue to feature a Face for CDH - please feel free to send in your photos and a short bio or your whole story and we will feature your child here.  Putting a face to CDH makes a huge difference! Email

We will also have some volunteer opportunities coming up within the next few weeks to focus more on community get togethers and also next year's 6th Annual CDH Awareness Day!

Again - thank you all!