Jefferson County families rally to raise awareness of rare Ewing sarcoma cases
Residents of Jefferson County, New York, are organizing support and advocacy after several local children were diagnosed with the rare bone cancer Ewing sarcoma, prompting calls for further investigation.
A small community in Jefferson County, New York, has come together after multiple local students were diagnosed with Ewing sarcoma, a rare bone cancer that affects roughly 250 children nationwide each year, according to the American Cancer Society.
Nine-year-old Hunter Stoffel, an avid hockey fan, was diagnosed at Golisano Children’s Hospital in Syracuse after his grandmother noticed a painful mass in his arm. Dr. Ajay Gupta, a sarcoma oncologist at Roswell Park Comprehensive Cancer Center, said the disease occurs in fewer than one in a million people in the United States and that early detection can lead to an 80% survival rate, though outcomes vary with the extent of spread.
The community’s concerns grew after Ashton Marcum, a recent high-school graduate from the South Jefferson Central School District, received a similar diagnosis in his pelvis, and other local cases—including a student named Tucker—were identified. At least three additional cases have been reported in recent years, two of which resulted in death.
Local activist Lisa Wilson, who lost a niece to cancer, founded the Concerned Citizens group to raise awareness and has spoken at municipal meetings. She and county district representative Chris Boulio have urged health officials to investigate possible environmental factors, such as nearby farms or a landfill, though the New York State Department of Health says it is monitoring the situation.
Families continue to support one another as patients undergo chemotherapy, radiation and other treatments, with recent milestones including Hunter ringing a bell to mark the completion of a treatment round at Upstate Cancer Center.