CHERUBS in the Raleigh News & Observer!

http://www.northraleighnews.com/2010/08/15/3721/charity-eyes-online-grants.html

Sunday, Aug. 15, 2010

Charity eyes online grants

Public can help by voting

BY CHELSEA KELLNER - Staff Writer

Dawn Williamson's spare bedroom is getting crowded.

Fifteen years running a children's nonprofit organization from that bedroom means bookcases wedged in the corners and boxes stacked from floor to ceiling along one wall, plus a desk and a table and medical journals and tote bags and fluffy costume angel wings.

Oh, and there's a bed in there too.

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  If you'd like to help local nonprofit CHERUBS win three grants to help in their work with families of children born with an often fatal birth defect, go to voteforcdh.org for links to CHERUBS' entry in all three contests. Or you can vote in each contest separately at apxgivesback.com and refresheverything.com.

"We're a group of moms and dads and grandparents," Williamson said. "Our budget is practically nothing."

CHERUBS, Williamson's all-volunteer organization that benefits children born with an often fatal birth defect called congenital diaphragmatic hernia, is competing for three grants that require them to rack up online votes to win. The extra cash would allow them to put more money toward research awareness and parental support - and free up enough of their existing budget to rent some shared office space.
"It would triple our annual budget," Williamson said. "That would be huge."

CHERUBS is facing off against competitors from across the country. Anyone can vote, and Williamson hopes more people will - CHERUBS is currently low in the rankings for two $25,000 grants from the Pepsi Refresh contest, but battling it out with a Utah charity for the top prize of a $100,000 grant from APX Alarm Co. Williamson has set up a website, voteforcdh.org, that links to all three contests. Her highest hopes are for the APX contest, though the organization is an underdog.

Williamson founded CHERUBS in 1995, after her own son was born with congenital diaphragmatic hernia. The condition means the baby is born without a fully formed diaphragm, leaving a hole inside the child's chest. The internal organs get pushed through that hole, crowding the heart and inhibiting lung development. About 50 percent of babies with the condition die, Williamson said. Her own son spent months at Duke Hospital after he was born, and eventually died at age 6.

Williamson's experience has helped shape the organization's work. They send about 200 tote bags a year across the country to parents of children born with congenital diaphragmatic hernia. In those bags are all of the things Williamson wishes she'd had when her own son was in the hospital, from informational pamphlets to hand sanitizer.

With the grant money, the organization would be able to provide assistance with travel expenses to parents having to commute to the hospital or stay at hotels to be near their child. They also would use the money to put together information kits to send to hospitals for parents whose child has been diagnosed with the condition, because there is often little or no information available.

Williamson is working to get legislation reviewed that would up the amount of funding awarded to the National Institute of Health to research CDH causes and cures.

Troy Miller found the organization in 2001, when his daughter Dallas was born with the condition. CHERUBS provided information and a much-needed connection to a community of families who had gone through a similar situation.

"It's good to know that you're not alone," Miller said.

After 27 days in intensive care, Dallas passed away on Nov. 7, 2001. Miller is now a volunteer with the organization, on call for parents who need someone to talk to.

"It's not heavily publicized, and the grants would mean that there could be further publication of what it is, to get the name out there, and provide more money for research," Miller said.

The deadline for voting in the APX Gives Back contest is Aug. 21. In the meantime, Williamson is crossing her fingers and continuing to work out of her Wake Forest home, where it's not just the guest bedroom that's crowded anymore - lately, the attic has been drafted for storage, too.