Jordan Shedrow and Paul Hollenback have been close friends since meeting on social media a few years back. Hollenback has Hunter syndrome, a life-threatening disorder that makes it difficult for the body to break down sugar molecules, leading to stunted growth and enlarged organs. It can also affect his ability to breathe and think. Although most with this genetic condition live only into their teen years, he is now 23, in part because he takes the only FDA-approved medication for the syndrome, Elaprase, which costs about $400,000 a year.
Watching his friend grapple with a host of health problems and struggle to pay for college, Shedrow felt inspired to act. Last spring, he pitched an idea to his Foundations of Civic Engagement class aimed at helping Hollenback and others who have this rare and little-understood disorder.
“It started out as a simple idea,” Shedrow said. “We wanted to help Paul pay for the rest of his college education and help with medical expenses.” That simple idea turned into FGCU’s largest student-run 5K, an awardwinning Community Engagement project and, in August, grew into a full-fledged nonprofit organization.
It began when Hollenback fell ill after one semester at Florida SouthWestern State College. It left him with memory problems, an inability to speak, mounting medical bills and a critical need for tuition money.
When Shedrow proposed a fundraiser for Hollenback to his class, five juniors signed on: Craig Connolly, Natalie Diaz, Bridget Miller, Cory Moore and Jessica Zink. “We heard what Jordan was saying and the dream he had, and I think we just kind of felt inspired,” Moore said.
The Hunting for a Cure project was born. Course instructor Courtney Satkoski said she was impressed with how quickly the group came together. “They hit the ground running,” she said. “You had to. To pull off something this big in a semester, you have to go that fast. There’s really not any other option.”
A requirement of the class is to team up with a nonprofit organization so they found one of the few devoted to Hunter syndrome – in Ohio. The Hunting for a Cure team’s 5K registered more than 100 runners, which Campus Reservations said was the largest student-run 5K FGCU has ever had. The team raised $30,000, including close to $12,000 from a GoFundMe page.
Satkoski was surprised so many donors were college students. “That was probably the neatest part was that they were not only inspiring the community, but they were inspiring fellow students who have limited budgets, to give money,” she said.
On Community Engagement Day in April, Hunting for a Cure won six awards, including Creating Healthy Communities, Overall Best Course-Based Service-Learning Project, People’s Choice, Judges’ Choice, Most Engaged Project and Service Faculty of the Year for Satkoski.
Hollenback wrote a letter in support of the team’s nomination for the Most Engaged award that said, in part: “My best friend Jordan really makes life a lot easier for me. I’ve never had anyone in my whole life who’s stood beside me to his capacity because they wanted to be friends rather than just help me … I think Hunting for a Cure is such a beautiful thing.”
Once the semester ended, Shedrow, his mother and Satkoski decided to keep going, forming a non-profit organization aimed at helping those with the disorder and working to find a cure. They hope the nonprofit will become the regional hub for Hunter syndrome research.
Shedrow and Satkoski have presented on the project at conferences at FGCU as well as the Florida Campus Compact and Florida Communications Association this fall.
Satkoski plans to have one of her Senior Capstone classes work on projects related to the nonprofit and will also involve some future Foundations of Civic Engagement students. Shedrow will serve as a teaching assistant for the capstone course.
“Hunting for a Cure, Inc. is future focused,” said Shedrow. “We’ve laid the foundation and because of this project, we’ve come alive. How great it is that we get to leave the world a bit better – all while working alongside and for my best friend?”
–Jordan Shedrow and Courtney Dwyer Satkoski contributed to this report.
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