Will You Help - Raising a Little CDH Awareness!

Do you see a need in your community to help families who have a CDH child or are expecting a CDH child?  Do you see a need, not being met which we can help you with?  If you do, please contact us at cdhawareness@breathofhopeinc.com.

Here are examples of needs Breath of Hope helps to meet:

Emily, ^Baylee's^ Mommy, will be sending out Birthday Cards to all families of angels on our mailing list!  As many parents of angels know, not everyone remembers their birthdays - it is nice to know we do!

Each year, for the last four years, we have participated in the United Way's Day of Caring, we get volunteers to help us assemble 500 infant hand print kits, most which are donated to the University of Virginia Medical Center's NICU.  Every family who has a baby admitted will receive a hand print kit to capture that moment.  (Not just CDH families - but all families there!)

Nationwide and Internationally too - we send Expectant and New Parents a kit with our Medically Reviewed publications, hand print kit, receiving blankets and a NICU Baby Book and we add in ribbons and wristbands.  Vital information is given to an expectant or new parent of a CDH baby.  We also have volunteers all over who provide our publications to hospitals, so they can give them to families expecting or who have a newly born CDH baby.

We always need anyone to write their Governors, Mayors and Congresspeople to request March 31st be Congenital Diaphragmatic Hernia Awareness Day!  This is also a great opportunity to make those aware in your community!  We provide all materials as guidance and if your city, town or state issue Proclamations or Resolutions - you keep the document!  We also encourage you to have events - small are large in your area to bring attention to this often overlooked birth defect.

We will be having the Jazz for Peace Event in Charlottesville, Virginia on March 23, 2012.  This is their 10th Anniversary and will coincide with Breath of Hope's Congenital Diaphragmatic Hernia Awareness Day Campaign which will be into it's 5th year!  We hope to bring more awareness to congenital diaphragmatic hernia, Breath of Hope and Jazz for Peace in the Charlottesville, Virginia community!

SAVE THE DATE - Week of June 18th, 2012 - our 3rd Annual Congenital Diaphragmatic Hernia Summit will be in Denver, Colorado - this will be the first time on the West Coast!  We need volunteers to help if planning to attend!  Our goal is to have more families enroll in CDH Research Studies, learn about the amazing hospitals and their doctors and nurses in that area and also meet with others who share their journey with CDH.  Each year thus far, we have learned of astonishing information from those doing research on congenital diaphragmatic hernia - many times before it is even published to the public! 

Breath of Hope also helps with any Fundraiser to help raise funding for medical research for CDH or which would benefit CDH patients, support for CDH families and help off-set costs of medical expenses for CDH families.

Please contact us at boh@breathofhopeinc.com if you would like to help or you have ideas to help your community!

As always - Thank you!

Thomas Jefferson Area United Way Day of Caring - Giving that Gives Back

Since 2007, Breath of Hope has participated in the Thomas Jefferson Area United Way's Laurence Richardson's Day of Caring.  Each year, in September, the Central Virginia's United Way coordinates hundreds of projects for other nonprofits and schools in the area and provides thousands of volunteers to help.  It is the time of year, other nonprofits and schools look forward to receiving volunteers to complete projects they otherwise could not have done without the human power required.

In the summer or 2007, I heard a radio advertisement requesting nonprofit organizations contact our United Way to obtain the volunteers needed for projects for one day.  We knew there was a project that we could untilize volunteers but we also wanted a project which would give back to the community.  Breath of Hope had been supplied infant hand print kits for our Expectant/New Parent Packages by individual Board Members and myself.  We had found a wholesaler which we could purchase these kits for approximately $5 each.  We knew we could assemble them using containers and paris of plaster for less than $5 each.  In fact, the total cost per kit with labels, ziplock bags and instructions are at a cost of about $1.25 each, far less than the cost we were paying.

We also had all our printed materials reviewed and edited by the University of Virginia's NICU staff lead by Robert Sinkin, MD and felt we should give back to them.  On average, 450 infants are admitted each and every year at the NICU there.  Today, a hand print kit is supplied to each and every family who has their baby admitted there.  The remaining are used in Breath of Hope's packages and we have had extra to help send to Project Sweet Peas Projects around the country.

This year we had an amazing group of volunteers from CFA Institute and Banana Republic of Barracks Road come and learn about congenital diaphragmatic hernia, Breath of Hope and help us assemble another 500 hand print kits.  And they see the results which we provide the UVA NICU.  We know that families throughout the area benefit from these simple kits.  We also know the staff at UVA's NICU enjoy giving this small token to families in order to capture their child's first days here on earth.

We thank the volunteers, the Thomas Jefferson Area's United Way (Shaele Wood should receive a metal for her coordination each and every year), PRA International for providing the space to complete this project and the UVA NICU for the inspiration, help and assistance to complete this project for three years.

Next year will be the 20th year of the United Way Day of Caring here in this area.  Twenty years of helping other nonprofits and organizations have volunteers provided so they can help others.  By giving, you give and get and it is returned,

We would also like to promote a wonderful Printer we used this year - their service and quality are amazing!  With very short notice we were able to get our labels and they went over and above the call of duty!  Lepin' Lizard Labels - order your labels from them - they are less than any others we have used and their service is amazing!

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

BREATH OF HOPE MAKES A DIFFERENCE!

Dear Mrs. Doyle-Propst and Breath of Hope Day of Caring Volunteers,

On behalf of the patients of the University of Virginia Children's Hospital, please accept our most sincere thanks for you donation of the handcrafted memory kits of the Newborn Intensive Care Unit for our littlest patent's first hand print. I cannot tell you how special your gifts are to the families who receive these lovely treasures!

We realize that much time has gone by and I am extremely sorry for my long delay in sending our acknowledgments. Please know that we have not forgotten your kind hearts!

Your group has created such a special and unique keepsake and this is an exceptional gift for our patients' families to receive. We are truly grateful for all the time and effort that you have put in to help our babies and their families.

As always, your contributions help families get through the most stressful and difficult periods of their lives. Your hand print kits create a special way for families to honor and treasure their children.

Please share with all those who have been involved in this effort how much the staff and families value everyone's generosity and thoughtfulness. We greatly appreciate your involvement and aid. We are grateful for your compassion and community spirit ins supporting the families and their children at the University of Virginia's Children's Hospital!

Sincerely,

Kimberly A. Garofalo
Volunteer Coordinator
UVA Children's Hospital

Handprint Kits from the United Way Day of Caring

With eight volunteers we assembled 500 of the pictured kits with Paris of Plaster and the Instructions inside. These will be a treasured memento for families whose children are admitted to the University of Virginia Children's Medical Center NICU and for those Breath of Hope Expectant Parents too.

The University of Virginia Health Service Supply Chain Management Staff is amazing! Thank you all!

Breath of Hope and the United Way Day of Caring

This is the 17th Annual United Way Laurence E. Richardson Day of Caring in Charlottesville, Virginia. It is an opportunity for local charities to receive volunteers to help with many things that may not get done due to limited manpower. Local businesses have their employees volunteer to help with anything from office work to landscaping.

Breath of Hope has signed up to receive volunteers on Wednesday, September 17, 2008 who will be assembling Infant Hand Print Kits which will go to the University of Virginia Children's Medical Center NICU. Families who have a baby at UVA's NICU will receive a hand print kit to keep as a treasured memory of their little one's first days on earth. UVA has approximately 450 infants admitted to their NICU each year we will be assembling 500. Of those kits, 50 will be used for Breath of Hope's Expectant Parent Care Package which has always included a hand print kit for these special babies.

Added to this - 17 others will learn of the congenital diaphragmatic hernia birth defect and may spread the word to many others too.

Caring, Spreading Awareness and Capturing Memories

On Wednesday, September 17 - Breath of Hope will have a project with the Thomas Jefferson Area United Way for the Day of Caring. We will assemble 500 baby hand print kits. Fifty of the kits will be used for our Expectant Parent Packages we send families of Breath of Hope along with a few other items which help these families prepare for their CDH baby.

The University of Virginia Children's Medical Center NICU has approximately 450 infants admitted each year. The remaining and bulk of these kits will be delivered to the University of Virginia's NICU so each family that has a baby admitted will have this special memento of their child's first moments.

A Community Grant will help fund the materials needed for these hand print kits and once that is finalized we will formally thank the corporation.

Each family will also know that Breath of Hope and the United Way Day of Caring made these hand prints possible. This will also spread a bit of Awareness!