J. C. Kuehn Miller

Read. Write. Repeat. Aspire to be a Janitor.

Working for a Non-Profit is More Than a Job (CDH Action Day)

Sunday, April 19th is Congenital Diaphragmatic Hernia Action Day. After gallons of coffee and hours of calling senators and congressmen, filling out indecipherable online contact forms for governors, Cherubs has acquired proclamations from 45 states and the US Senate.

11079491_10152778840587006_4988425387645785457_oCongenital Diaphragmatic Hernia (CDH) is a birth defect that affects families across the world. During gestation, the diaphragm fails to fully form allowing the bowels to move into the chest cavity where the lungs should be. There is a 50% mortality rate and the cause is not known. It happens in 1 out of every 2,500 births (as common as Cystic Fibrosis and Spina Bifida). In America alone, CDH strikes 1,600 families a year and approximately 800 of those babies do not survive. The babies that do survive will endure grueling hospital stays.

We lovingly call these children our Cherubs.

Last year, we lost a teenage girl due to complications caused by CDH. Last month, an unborn baby to a local family was diagnosed with CDH.

I work in the national headquarters for Cherubs, the largest non-profit whose focus is to raise awareness, provide support to families, and facilitate CDH research. My specific responsibility since last fall has been to work on the research database with information gathered from families for 20 years.

Though most of my time is spent in front of a computer, I leave work exhausted.

If you were to look over my shoulder (which would be extremely annoying), you would see cells filled with numbers and medical terms I can’t pronounce. What’s the big deal? It’s just information.

It’s not.

Every medical term is a painful and deadly defect. Every number is a baby that means the world to loving parents. Attached to those “mere numbers” is a tag that either says “Survivor” or “Non-Survivor.” Attached to every “Non-Survivor” is a grieving family; attached to every “Survivor” is a family hoping against the odds.

Working at a non-profit is more than a job. It is a fight. It is a fight against despair. It is a fight for life. It is a struggle for limited funding with other charities who care more about housing stray cats than saving human lives.

10990053_10152783073482006_7784703147543383774_oI’m not asking for money (though if you are moved to donate, it is tax-deductible and we would be eternally grateful); I’m asking you to help us raise awareness. With more awareness, the chances of finding the cause and cure skyrocket.

That said, April 19th is more than an awareness day. It is an Action Day. Take action. Change your profile picture, donate, volunteer, share this information; do SOMETHING.

Help us Save the Cherubs.

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This entry was posted on April 18, 2015 by in Blog and tagged , , , .
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