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Biking 700 miles in seven days is not something many people would do to raise money to fight a rare disease. Yet, that’s exactly what six cyclists, led by Justin Akin, did for the HLH Ride for a Cure. The cyclists began their epic ride in Natchez, Miss., and ended with a lap around the Burnet Campus of Cincinnati Children’s to deliver $100,000 for the HLH Center of Excellence at Cincinnati Children’s.
A life-threatening condition, hemophagocytic lymphohistiocytosis (HLH) is a disorder of the immune system in which too many infection-fighting cells are produced and activated, causing damage to the organs and tissues of the body. Because the initial symptoms of HLH look like a common infection, the disorder is often misdiagnosed or diagnosed too late. Chemotherapy and bone marrow transplantation are the only effective treatments for HLH.
Cincinnati Children’s cares for more cases of HLH each year than any other pediatric medical center. Founded through generous philanthropic support, our HLH Center of Excellence tackles the disease through a comprehensive spectrum of clinical care, research, education and family support.
The HLH Center of Excellence is funded through and relies on philanthropic gifts. That is why the money raised by the HLH Ride for a Cure is so important.
The HLH Ride for a Cure began as a way for Justin to honor his sons, Matthew and Andrew, both of whom succumbed to HLH. He was joined by HLH survivor Sean Feltoe, Dennis Flaherty riding for his son William, Olivier Gillier riding for his daughter Miabelle, Doug Myers riding in memory of his daughter Annie, and Patrick Madden, a friend of the Akin family.
“We chose to ride and fundraise for the HLH Center of Excellence at Cincinnati Children’s because it is the most experienced facility in the nation for treating this condition,” says Justin. “We believe in Cincinnati Children’s. But more importantly, we believe in all of the amazing people that work here.”
And, thanks to their efforts, our HLH team can move closer to finding a permanent cure for this devastating illness.
If you have had an experience with Cincinnati Children's, we invite you to share your story.
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