February 2, 2013
I Care: Working towards a cure for cystic fibrosis

20120202_AOC_ICareCF_088w.jpgStrong-willed Taya Wieler, 2, right, struggles and cries as she receives treatment to keep her lungs clear of a thick life-threatening mucus caused by cystic fibrosis. Her mother, Amy Rovai-Wieler, patiently administers the medicine while her healthy daughter, Teagan, 5, cuddles them. Teagan's twin, Taryn, also has cystic fibrosis. The pair must receive the 20-minute treatment up to six times daily.
Though the median age for survival for cystic fibrosis is 37, many die sooner. A simple winter cold can kill. To combat the disease, Ravai-Wieler has become an active fundraiser for the Cystic Fibrosis Foundation, which funds research for a cure. She has chaired the Great Strides walk for CFF in Sacramento for years and she founded Couture For A CF Cure, a website that sells handmade bows and other children's accessories. "It's added a purpose to everything we do," she says. "The girls have learned it's important to be advocates and give back."


IMG_3221.JPGThe twins recently turned 5-years-old. When asked what she wanted for her birthday Taryn said "no more breathing treatments." Her mother explained that she needed to continue her breathing treatments but that scientists and doctors were working really hard to find a cure. With their mother's help the girls decided to create a photograph of themselves to fundraise a goal of $500 for their 5th birthday. Before modern treatment children did not live to see their fifth birthday. Veiwers were asked to contribute $5. Rovai-Wieler posted the photograph, at left, on her Facebook page. It went viral. Each day the girls checked how muched they raised and in three weeks they ended up collecting $2,500, all of which was donated to the Cystic Fibrosis Foundation.
About 30,000 people have cystic fibrosis in the United States, too few for the disease to qualify for federal funding for research. This is why personal efforts such as these are so important. Millions of dollars are needed to fund each clinical trial. Progress is being made but with 1,500 different mutations of the disease to tackle, the job of curing cystic fibrosis is a large one.

IMG_3240.JPGThe cystic fibrosis community has been instrumental in Ravai-Wieler journey in caring for her children. Eight years ago she met and befriended a family who had a newborn with cystic fibrosis. She joined a Great Strides walk and hosted a Pampered Chef party to fundraise for the organization. Three years later Taryn was daignosed with the disease. "As overwhelming and sad as it was to find out I had a child with CF, I had a whole support system set up," she said. The cystic fibrosis community is like a family to her, communicating mainly through the internet. Though it's painful to see other people's children become diagnosed, hospitalized or die, she make a point of reaching out to other families in need to support them. She sends care packages to hospitalized children worldwide and reaches out to families with new diagnoses. "Originally you go into it to help your own children. I want them to know we are not just sitting back and doing nothing. Then you meet so many inspiring people," she says. "You're doing it for everybody, not just your own children."

To learn more about cystic fibrosis and how you can help visit www.cff.org.
To purchase children's accessories to support CF research visit www.coutureforacfcure.com.

If you know an extraordinary volunteer who should be profiled in the I Care column please email Autumn Payne at apayne@sacbee.com.

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