In August 2024, Emily Burns noticed something was off with her vision. As her sight became worse over the next week — and was accompanied by omnipresent headaches — she went to the first place one would think to go when having vision issues: the eye doctor.
When a field vision test at her ophthalmologist’s office revealed that Emily’s left peripheral vision was fading, her doctor thought Emily might be having a stroke and suggested she go to the emergency room at nearby Corewell Health William Beaumont University Hospital in Royal Oak.
Physicians at Corewell discovered that Emily had a brain tumor. When the tumor was removed a week later, doctors found it was glioblastoma, the most common and aggressive form of brain cancer in adults. In 2023, nearly 12,000 Americans were diagnosed with glioblastoma, which has a five-year survival rate of only 6.9%.
“I think at first I was a little numb,” Emily said. “It was weird because it wasn’t a situation where I had been going to multiple doctors to figure out what was going on. I went to my eye doctor, went to the hospital, then had some testing. I was pretty much feeling normal up until then.”
Hope and connection
Around the time Emily was first diagnosed, her son Will was beginning his junior year at Michigan State University. Throughout the year, Will continued to research ways to help his mom.
“Living in East Lansing, going to class, hanging out with my friends: I have this great life, and I owe it all to my mom,” he said. “There’s no better use of my free time than to help her.”
While looking up information about glioblastoma treatment, Will came across an article about Charles “Chaz” Hong, chair of the Department of Medicine in MSU’s College of Human Medicine, who discovered a compound that may hold the key to improving the prognosis for glioblastoma using funding from the National Institutes of Health, or NIH.
Hong and his team found that a protein called GPR68 can sense when the area around a tumor becomes more acidic. When this happens, it sets off signals that help cancer cells stay alive, grow and avoid treatments meant to kill them. They also identified a compound, dubbed Ogremorphin, that blocks GPR68 and destroys cancer cells.
“Noncancerous cells are going the speed limit,” Hong said. “A cancerous cell is going 100 miles per hour and has turbo drive. We’ve discovered a mechanism to target the turbo drive and wreck it. And it seems to stop cancer cells in their tracks.”
Hong believes that blocking GPR68 “gives us one of the best shots at turning a fatal cancer into a manageable condition,” similar to the way in which HIV can now be treated using medicine — the disease never goes away, but outcomes can be drastically improved, leading to a longer life.
“It gives hope for people to keep glioblastoma — and potentially other fatal cancers — in check and become a major medical victory,” Hong said.
Will was intrigued by Hong’s work, immediately sensing it had the potential to help his mom. He sent Hong an email asking to learn more about his research. Hong then arranged for Will and Emily to see his lab and meet with him and his students over winter break.
“[Dr. Hong] didn’t have to do any of this, but he went out of his way to help my family and show us the promise his research can offer,” Will said. “It meant a lot to my mom and me.”
Spartans helping Spartans
Hong’s interaction with the Burns family was more than just a medical professional helping a patient and her family. It was a case of Spartans helping Spartans.
The Burns family boasts a long legacy of MSU grads: Emily and her husband, Bill, met as students at Michigan State. Will’s sister, Jessie, joined him in East Lansing this fall. Will and Jessie’s grandparents lived in East Lansing when they were growing up — their grandpa is an MSU alum — and many of their extended family members are also Spartans.
“It’s really cool to see that a place I’m part of, that my family feels really connected to, is conducting research that could benefit my mom,” Will said.
Emily, who lives in Ferndale, is in stable condition after undergoing radiation and chemotherapy and is taking medication to manage her disease. While her glioblastoma hasn’t progressed, her sight remains abnormal: She has trouble seeing to her left, and her vision is blurry. She is unable to drive and has been on medical leave from her job as an elementary school teacher.
“Prior to my diagnosis, I was more of the organizer in our family: making sure everybody was at their appointments, running errands, coordinating schedules,” Emily said. “Now, Bill has had to take over that role because it’s harder for me to see. I can still read and use the computer, but I do need extra help sometimes.”
Federal funding cuts: What we stand to lose
With federal funding for the NIH drastically reduced, research that can help patients like Emily is in jeopardy.
“Without NIH funding, research will come to a screeching halt,” said Hong. “We’re motivated to do this work for our patients. We want to make their lives better — and in my case, to make it so that people with a brain cancer die with the disease, rather than die of it.”
“It just doesn’t even make any sense how this could be beneficial to anybody,” Emily said. “It’s worrisome for the patients that could be helped by the research, but it’s also worrisome for the researchers who have spent so much time and energy to get all of their work done and now have nothing to show for it.”
Hong called the first GPR68 inhibitor ogremorphin “a prototype of the future therapies to come that doctors will have to manage brain cancers, rather than have it be a horrible, progressive disease.”
Now, that work is in question and along with it — the Burns family says — the promise it offers.
“Yes, taking away the money is awful,” said Bill, “but you take away way more than the money: You take away the right to hope.”