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Saturday, Dec 20, 2014

Overcast, 30 °F

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Through events such as Race for a Reason, OHIO physician Daryn Straley and his wife, Kathy, have raised about $50,000 for the Cystic Fibrosis Foundation, in honor of their daugher, Lilly (pictured here), who suffers from the disease.

Photo courtesy of: Kathy Straley

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Lilly's Sunshine, the Straley's fundraising arm for the Cystic Fibrosis Foundation, is one of about 20 charities that the Ohio University community will be fundraising for during the O'Bleness Health System Race for a Reason events on April 28.

Photo courtesy of: Allie Pisching

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Hosted by OHIO's Center for Sports Administration and Athletes in Action, Race for a Reason enables athletes to raise money for a cause of their choice while competing on one of three courses: a 5K road race, a mud run or a triathlon.

Photo courtesy of: Allie Pisching

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As Associate Professor of Family Medicine Daryn Straley laces up for Saturday's mud run, there will be no mistaking his cause. With her signature blond braids, chic frames and perpetual smile, Straley's four-year old daughter, Lilly, drives just about all of his endeavors these days.

Lilly is a ray of sunshine in the Straley's battle against cystic fibrosis, a life-shortening genetic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States. Lilly was diagnosed with the disease at six months. Since then, her parents, Daryn, who also serves as a physician at Campus Care, and Kathy, have devoted themselves to the search for its cure.

Lilly's Sunshine, the Straley's fundraising arm for the Cystic Fibrosis Foundation, is one of about 20 charities that the Ohio University community will be fundraising for during the O'Bleness Health System Race for a Reason events on April 28. Hosted by OHIO's Center for Sports Administration and Athletes in Action, the event enables athletes to raise money for a cause of their choice while competing on one of three courses: a 5K road race, a mud run or a triathlon.

When a student or community organization registers for the 5K or mud run, half of members' entry fees are automatically donated to the group's cause. All teams are encouraged to engage in outside fundraising, while some of the relay races have an added incentive: prize money toward the winning team's cause.

Individual competitors can contribute through any of the three races by setting up an online fundraising page. So far, 10 individuals are signed up to contribute to Lilly's Sunshine.

This marks the second year that the Center for Sports Administration has enabled competitors to choose a cause – setting it apart from the swarm of 5K fundraising events that take place across campus each spring.

"We're just trying to encourage people to find something that's important to them," said event chair Allie Pisching, a second-year sports administration graduate student. "It's a great way to show support for community groups, youth groups, local nonprofits, national charities, student groups or even a family member. It's all individual, and that's what makes this race so unique."

Through fundraising events such as Race for a Reason, the Straleys have raised about $50,000 to date for the Cystic Fibrosis Foundation, which aims to fight and ultimately cure cystic fibrosis by investing in drug development research. According to the foundation's website, 30 potential drugs are currently in development for the treatment of cystic fibrosis. But this research does not receive federal funding, necessitating continual fundraising.

Afflicted families find hope in the medical breakthroughs of the past several decades.

"In the 1950's few children with cystic fibrosis lived to attend elementary school. Now the median age is mid-thirties," said Lilly's mother, Kathy. "That statistic just blows my mind on how much progress science can make. Science equals life, and donations equal science."

This Saturday, Kathy will be competing in the Race for a Reason 5K event. The family also plans to participate in a Great Strides fundraising event May 5 on Ohio University's Lancaster campus.

Despite being a relative newcomer to Athens, Kathy is already working to coordinate a "Run Like Hell" 5K fundraiser next fall on the Athens campus. Scheduled for Oct. 20, participants will race along the bike path in full Halloween costumes to raise money for the Cystic Fibrosis Foundation.

The Straley's dedication to their cause doesn't stop with fundraising. Daryn is hoping his current research with OHIO's Heritage College of Osteopathic Medicine will lead into cystic fibrosis-related research.

"Naturally there's a personal drive to want to contribute somehow to the area of research that might benefit her, but fortunately, it's not that strayed from what's personally intellectually interesting to me, too," he said. "My work has been in close proximity (to cystic fibrosis), but not quite there, so I'm trying to inch closer while keeping an emotional interest as well as an academic or intellectual one."

He said his professorship and Ohio University's strong foundation of research provide him with vast opportunities to one day better the lives of all cystic fibrosis patients. As Daryn knows all too well, there is much room for improvement.

On an average day, Lilly must attend one to three hours of therapy using a respiratory nebulizer for her lungs and "the vest," an electronic airway clearing system that works through body vibrations to mobilize secretions, for her chest. She takes medication eight times a day in order to properly eat, as her body is without the necessary digestive enzymes. There are also regular visits to Nationwide Children's Hospital in Columbus – the last of which included seven hours of testing.

Despite the inconveniences, these measures have been life-saving for the resilient preschooler. And the Straleys are hopeful that Lilly's story, and the fundraising it inspires, will lead to many happy tomorrows.

"It's all about the hope and the compassion for other people's struggles," Kathy said. "People don't realize that their small contribution is truly changing a person's life. But when everybody collaborates, it makes a big difference."

For more information on the O'Bleness Health System Race for a Reason, visit http://www.sportsad.ohio.edu/events/raceforareason/. To watch a video and/or donate to Lilly's Sunshine, visit http://www.cff.org/great_strides/KatherineStraley or email sunshineforlilly@gmail.com.

To watch a video and/or donate to Lilly's Sunshine, click here*.

* Following these links takes you outside Ohio University's website.