Cyclists Present Research Funds to Cincinnati Children’s After Grueling Journey

700-Mile Ride to Medical Center Aids HLH Center of Excellence

Friday, October 10, 2014

CINCINNATI – After riding their bicycles 700 miles in seven days from Mississippi to Cincinnati Children’s Hospital Medical Center, cyclists on Oct. 10 presented a check for $350,000 to HLH Center of Excellence to support research into a devastating immune disorder.

The 700 Miles to Hope ride to increase awareness and research funding for HLH was led by Justin and Kristen Akin, St. Louis, founders of the Matthew and Andrew Akin Foundation. The Akins lost both of their sons, Matthew and Andrew, to HLH, or hemophagocytic lymphohistiocytosis, a mysterious immune disorder with few treatment options that strikes children at an early age.

HLH throws the immune system into irreversible overdrive, and children die from uncontrolled inflammation that destroys their blood cells and immune systems. Too often children are not accurately diagnosed until the disease has progressed to a point of no return, according to Ashish Kumar, MD, PhD, a physician at the Cincinnati Children’s Cancer and Blood Diseases Institute at Cincinnati Children’s who also biked the 700-mile trip.

Riders were welcomed by scores of applauding medical center staff and patients during an event at the hospital. In accepting a check for research funding from the Akins, Michael Fisher, president and CEO of Cincinnati Children’s, said the contribution will help the HLH Center of Excellence advance its mission.

“The physicians and researchers at our HLH Center of Excellence are making real progress toward a better understanding of this disease and improving diagnosis and treatment,” Fisher said. “The determination and effort by the Aikens and fellow riders to raise awareness and much-needed research funding will advance this cause. On behalf of everyone at Cincinnati Children’s, I want to say thank you.”

700 Miles to Hope actually started with Justin Akin riding his bicycle in memory of his sons. The ride has grown and this year’s fourth annual trip included a group of more than 15 cyclists – parents of patients, an HLH survivor, physicians and others.

“We’re riding our bicycles on behalf of children who can’t because they’re in the hospital fighting for their lives instead of doing what they should be doing: enjoying life at home and riding their own bikes,” said Akin. “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. We believe in Cincinnati Children’s. But more importantly, we believe in all of the amazing people that work here.”

Cincinnati Children’s has become a preferred referral center for the complex disease, in part because researchers have developed better methods of diagnosing HLH early and are conducting extensive research into new treatments. This includes a current clinical trial for a treatment that helps manage the disease by calming down the body’s immune system, and research into what one day might be a gene therapy for the HLH.

The only current treatment for HLH known to be potentially curative is a bone marrow transplant. Unfortunately, this treatment also comes with life-threatening complications, underscoring the need for better solutions.

Helping contribute to the HLH funding effort is Novimmune, a Geneva-based drug company that donated $25,000 to the ride. The company is currently developing an experimental drug for HLH in conjunction with several hospitals in the U.S., including Cincinnati Children’s.

View a short video about this year’s ride or a video documenting the 2013 ride.

About Cincinnati Children's:

Cincinnati Children’s Hospital Medical Center ranks third in the nation among all Honor Roll hospitals in U.S.News & World Report’s 2014 Best Children’s Hospitals. It is also ranked in the top 10 for all 10 pediatric specialties. Cincinnati Children’s, a non-profit organization, is one of the top three recipients of pediatric research grants from the National Institutes of Health, and a research and teaching affiliate of the University of Cincinnati College of Medicine. The medical center is internationally recognized for improving child health and transforming delivery of care through fully integrated, globally recognized research, education and innovation. Additional information can be found at www.cincinnatichildrens.org. Connect on the Cincinnati Children’s blog, via Facebook and on Twitter.