Doctors, Families Rally for Cure for Deadly Birth Defect

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

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!

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!

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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!