Registry strives to find clues on mysterious, rare eye cancer in area

HUNTERSVILLE, N.C. — There’s a new effort to unlock the mystery surrounding a rare eye cancer that’s affected nearly two dozen people in our area.

Channel 9 anchor Allison Latos learned how a VISION registry hopes that collecting patient information around the country and world could lead to a cause and a cure.

Jessica Boesmiller has fought a rare cancer called ocular melanoma for more than three years.

Her symptoms began with blurry vision during pregnancy with twins in 2017.

Boesmiller was diagnosed with the condition and doctors had to remove her right eye because the cancer spread to several of her organs.

She will soon participate in two new clinical trials in Philadelphia.

“We’ll get a biopsy, and we’ll see if I am eligible for another clinical trial,” Boesmiller said.

She’s not the only local patient to fight ocular melanoma.




The cancer that normally impacts 5 in 1 million people has affected more than 20 people in the Huntersville region.

It is unknown why there are those cases in the area.

However, The Melanoma Research Foundation hopes a new patient registry could help researchers find clues in the cause of the cancer.

“What happened in Huntersville was the impetus of the VISION registry,” MRF CEO Kyleigh Lipira said. “It’s patients putting in their own info from where they live to when they were first diagnosed.”

Data on the disease is so sparse that officials hope collecting patient information across the globe will lead to breakthrough research and will provide lifesaving treatment options for patients like Boesmiller.

“I remain prayerful and hopeful and focus on the day-to-day with my children,” she said.

About 2,000 people a year get diagnosed with ocular melanoma.

So far, around 200 patients have entered their information in the VISION registry.

(Watch the video below: Huntersville family continues push for research money for ocular melanoma study)