Cincinnati Children's doctor to bike for HLH immune disorder - Cincinnati News, FOX19-WXIX TV

Cincinnati Children's doctor to bike 700 miles to raise money, awareness for immune disorder

The 700 Miles to Hope ride was started four years ago by Justin Akin, a man from St. Louis who lost two young sons to HLH. (Photo pulled from Youtube video) The 700 Miles to Hope ride was started four years ago by Justin Akin, a man from St. Louis who lost two young sons to HLH. (Photo pulled from Youtube video)
After seeing children and families fight this rare and mysterious disorder, Dr. Ashish Kumar decided to do something to help get the word out. (pulled from Youtube video) After seeing children and families fight this rare and mysterious disorder, Dr. Ashish Kumar decided to do something to help get the word out. (pulled from Youtube video)
CINCINNATI, OH (FOX19) -

A Cincinnati Children's Hospital Medical Center doctor is joining 20 other bikers to ride across the nation in an effort to raise money and awareness for the immune disorder hemophagocytic lymphohistiocytosis (HLH).

After seeing children and families fight this rare and mysterious disorder, Dr. Ashish Kumar decided to do something to help get the word out.

"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."

Kumar said that, often times, children are not accurately diagnosed until it's too late. HLH can through a child's immune system into 'irreversible overdrive,' leading to death.

"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."

The ride starts in Natchez, Miss. and ends at Cincinnati Children's.

The 700 Miles to Hope ride was started four years ago by Justin Akin, a man from St. Louis who lost two young sons to HLH. They passed away at Cincinnati Children's. Money raised from the ride will go to research at the hospital's HLH Center of Excellence.

Riders include others who have lost children to the disorder, people whose children survived HLH and at least one former patient who is now in his 20s.

According to officials at Cincinnati Children's, the only potentially curative treatment for HLH is a bone marrow transplant, but that alone comes with risks.

But Kumar says they are still making progress in understanding the disorder.

"There is hope because we have learned so much," he said. "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 that genetic causes 80 to 90 percent of the time, but HLH still needs better diagnosis and treatment."

The ride's goal is to raise $250,000 for HLH research. Kumar has raised $2,000 of his $5,000 goal. For more information visit the Cincinnati Children's website.

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