Cincinnati Children’s Doctor Biking 700 Miles in Seven Days

Journey Will Raise Awareness and Research Funds for Rare Immune Disorder

Thursday, September 25, 2014

After years of seeing children and their families battle a mysterious immune disorder with few treatment options, Cincinnati physician Ashish Kumar is taking the fight out of the hospital and to the open road.

On Oct. 4, the pediatric hematologist at Cincinnati Children’s Hospital Medical Center will join over 20 other riders as they bicycle 700 miles in seven days from Natchez, Miss., to the medical center’s front door in Avondale. Their goal: raise awareness and research funds for a rare and hard-to-diagnose immune disease with a very long name – hemophagocytic lymphohistiocytosis, or HLH.

“Many physicians have never heard of HLH,” said Kumar. “Pediatric hematologists are aware of it, but recognize it is difficult to diagnose because some of the signs and symptoms are those of any other common infection found in children. There are some confusing and confounding features that make the diagnosis challenging and tricky.”

According to Kumar, too often children are not accurately diagnosed until the disease has progressed to a point of no return. HLH throws their immune systems into irreversible overdrive, and children die from uncontrolled inflammation that destroys their blood cells and immune systems.

“After seeing so many children suffer, this has become a personal cause for me, not just a professional one,” he said. “I want to put the knowledge I have to the best use possible to spread awareness and raise money for research.”

Kumar is participating in the 700 Miles to Hope ride for HLH. Started four years ago by Justin Akin, a St. Louis resident who lost two young sons to HLH, the ride will raise money for research at the HLH Center of Excellence at Cincinnati Children’s, where both of Aiken’s sons died from the disease. The ride will include others who have lost children to HLH, some people whose children survived the disease, and at least one former HLH patient now in his 20s.

Also joining Kumar on the ride are Cincinnati Children’s colleagues, chaplain Mary Ann Hegner and occupational/physical therapist Jill Bakker.

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.

“There is hope because we have learned so much,” said Kumar. “Ten years ago we knew of only one genetic mutation that causes HLH, and it accounted for only 20 to 30 percent of cases, so for most cases we had no clue. We now know the genetic causes 80 to 90 percent of the time, but HLH still needs better diagnosis and treatment.”

Ashish Kumar, MD, PhD arrives to work at Cincinnati Children's after his daily bike commute.

Getting away from his medical center duties for a one-week bike ride is challenging for a busy person such as Kumar, who puts in long days caring for patients and conducting research. His other challenge is wondering if it’s a little crazy to attempt riding a bicycle 700 miles over the course of seven days. Fortunately, he commutes a total of 20 miles a day to and from work.

“It is crazy, and I don’t think 20 miles a day is enough to train for a 700-mile bike ride, so I’ve been training a bit on weekends and trying to fit in as much riding as I can with my schedule,” he said. “I’ve been able to ride 80 miles in a day. If I can do 80 miles alone, this means with a group I can do 100 – on one day. Whether I can do seven in a row, we’ll find out.”

The ride’s goal is to raise $250,000 for HLH research. Kumar has so far raised $2,000 of his personal $5,000 goal.

More information about the HLH Center of Excellence at Cincinnati Children’s and the 700 Miles to Hope ride can be found at: http://www.cincinnatichildrens.org/service/h/hlh/default/

To view a short video about this year’s ride: https://www.youtube.com/watch?v=aV1DDs893c8

To see a video documenting the 2013 ride: https://www.youtube.com/watch?v=52adKOxZ8u8

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.