Laura Rowley, at left, has glioblastoma and hopes that an increased awareness of the disease will lead to more clinical trials.

When JB Bird was diagnosed with glioblastoma (GBM), he had never heard of the disease and knew little about brain tumors in general.

“I just read the most standard web pages about it,” said JB, who lives in Dade City, Florida. “That was aside from health care providers trying to explain it to me from my hospital bed while I was recovering from surgery. I didn’t retain much of the information then.”

JB said his family and friends also were unaware of GBM – the most common and most aggressive type of primary brain tumor that affects 12,500 adults in the U.S. each year. Most people he meets have never heard of it.

“I explain that it’s the most aggressive form of primary brain cancer, that all the treatments are non-curative,” JB said. “I always say I’m doing really well with my treatments, and I’m just going to keep going.”

JB’s experience is common among people who are diagnosed with GBM.

The lack of awareness surrounding rare, yet aggressive diseases becomes publicly apparent when high-profile people are diagnosed. In July, Sen. John McCain announced his GBM diagnosis after having surgery to remove a blood clot. The next day, published the story, “John McCain’s cancer: What is glioblastoma?” A flurry of news stories followed with the media and general public grappling to understand the disease and available treatment options. In August, former Philadelphia Phillies catcher Darren Daulton died after a four-year battle with GBM. Sen. Ted Kennedy and Beau Biden, the son of former Vice President Joe Biden, also died from the disease in recent years.

I hope this motivates researchers who are looking for solutions because the disease can progress so fast.

Brian Biggs, GBM patient

When GBM becomes a part of the national dialogue as a result of a public figure being diagnosed with or dying from the disease, many GBM patients feel empathy for that person. Many also hope that an increase in awareness will lead to greater progress in developing treatments that improve survival.

“It’s always sad when you hear someone else has to go through this and that they’re facing GBM,” JB said. “When it’s on such a national stage, GBM will get more attention. Whether that means more research or more awareness, those are the good things. It’s just sad news to hear that anyone has to go through this.”

Laura Rowley, a GBM patient who lives in Seattle, hopes that an increased awareness of GBM will lead to more clinical trials.

“It’s very important because we need to figure this out at some point – the sooner the better,” she said.

Brian Biggs, a GBM patient who lives in Lovettsville, Virginia, said he feels sorry whenever he learns of anyone who has GBM. However, he said, increased awareness of the disease is important.

“I hope this motivates researchers who are looking for solutions because the disease can progress so fast,” he said.

Because GBM is a rare disease, many people don’t learn about it unless they or someone they know is diagnosed. Increased public awareness of GBM may make it easier for GBM patients to explain to others what they are going through.

JB said he often talks to people about GBM. After the recent news coverage of GBM, he said, others have been more knowledgeable of the disease.

“It does add some realness to the disease – that it’s something people are facing every day,” he said.

Brian Biggs, a glioblastoma patient from Lovettsville, Virginia, said it is important to increase awareness of the disease because it can progress quickly.