When Juleigh Green was diagnosed in 1999 with a rare and deadly cancer called ocular melanoma in her left eye, she knew no one else with the disease.
“At the time, I just wanted to talk to someone who had been through this, to hear some words of encouragement,” the Birmingham, Ala. third-grade teacher says in this week’s issue of PEOPLE. “But there was no one to talk to. It’s just so incredibly rare.”
But since then, Green, now 47, has found plenty of people to talk to about it from her alma mater, Auburn University.
Some three dozen alumni, employees or relatives of employees, most on campus between 1983 and 2001, have been diagnosed with the disease — including Green’s sorority sister and another friend from her years at Auburn.
“This isn’t normal,” Dr. Marlana Orloff, an oncologist at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia.
She and other doctors are now searching for a common link between the victims. Orloff has also also been studying a group of 18 people with the disease from Huntersville, North Carolina — including several women in their 20s who went to the same high school.
“This is such a very rare disease,” she says, “and the fact that in two separate areas we have a situation where there were younger women who knew other young females with it has really piqued our interest.”
After Green’s left eye was removed to prevent the spread of the cancer, she received a call in 2001 from Auburn friend Allyson Allred, a preschool teacher in Birmingham who had been recently diagnosed and heard about Green’s struggle with the disease.
The pair bonded and supported each other through prayers and frequent phone calls when Allred’s right eye was removed, and remained close in the years since.
Then in 2012 Green’s sorority sister, Ashley McCrary, was also diagnosed with ocular melanoma.
“I stood up, thinking, ‘What? I have two friends who have this cancer, who have had their eye removed,’ ” recalls McCrary, 48, a marketing specialist who lives in Auburn. “I was in complete shock.”
The surprise only grew after McCrary shared a post on Facebook in 2016 that included a photo of her right eye before it was removed, asking if anyone knew others with the disease from Auburn. Dozens replied with their own stories and medical records to back up their claims.
One was alumnae Lori Lee, now 54, diagnosed in 2013 and currently battling the spread of the disease to her liver.
She, Allred, 48, McCrary and Green text and talk and pray together daily to support each other’s continued struggles with the cancer — in Allred it’s spread to about a dozen places in her body, and is now in nine spots including her brain.
They are focused on finding others from Auburn with the disease and raising money for research into its mysterious connection to the school through their own fundraising effort, eyepatchchallenge.org, with about $12,000 raised so far.
About $135,000 to $200,000 is needed to fund the study, doctors tell PEOPLE. “We’re looking into environmental toxins,” says Orloff. “Air, water, soil. We don’t really have any leads. We’re starting at square one.”
For more on the spread of this rare eye cancer, pick up this week’s issue of PEOPLE, on newsstands Friday.
However, the state of Alabama and Auburn University have decided not to provide funding.
McCrary tells PEOPLE she met with a staffer in the governor’s office and they want to wait to see how many cases were confirmed by the Alabama Department of Health and Auburn before moving forward. “We are still hoping for consideration from them,” she says.
Allred’s father, Bill Armistead, a former Alabama state senator, tells PEOPLE that after sharing his daughter’s story with state senator Larry Stutts, M.D., Stutts introduced an amendment earlier this year to Auburn’s education budget to fund $100,000 for research.
The school pushed back, Armistead says, and its lobbyists convinced senators to pull the amendment from the budget.
“My daughter is one of over 35 people diagnosed with ocular melanoma that have a connection to Auburn,” Armistead says. “This is not an issue that Auburn nor the city of Auburn can continue to overlook.”
When an Auburn spokesman was asked why the school is not funding a study, he provided a statement that said the school is working with the Alabama Department of Public Health and researchers.
“Most vexing for those affected by this disease—and for us—is that the scientific community has not yet identified the potential cause, or causes, of uveal melanoma, and ADPH officials have stated it would be premature to determine that a cancer cluster exists in the area,” the statement reads.
McCrary says she ok with Auburn not providing funding dollars to avoid the appearance of bias in the results — for example if the research efforts came up empty “some might say ‘of course it came up empty because Auburn University paid for it.'”
Lee, however, can’t believe that while she is undergoing cancer treatment neither the school or the state is providing funding and the onus is on her and others with ocular melanoma to come up with money.
“They want us to raise money on our own. I was like, ‘Are you kidding me?’ In one way, it’s fine about the university because if nothing came up, people would say they were hiding something,” she says.
“But there are four of us, two of us in treatment, would you expect cancer patients to raise money for their own research? That is ludicrous to suggest but that is what we we are doing, through eyepatchchallenge.org.”
The women say answers can’t come soon enough.
“Our lives are at stake,” says Allred. “I have no treatment option right now. We need a treatment for this, and my doctor (Takami Sato, M.D., PhD at Jefferson University Hospital in Philadelphia) says he can have a treatment for this within five years of finding a cause.”