Chris Elliott’s family will spend tonight slurping steamed clams in his honor.

Elliott died six years ago today from a malignant brain tumor.

“That was one of Chris’ favorite things to do. We eat as many as we can,” said his wife, Dellann. “We eat them for him.”

Three weeks before his death, Chris and Dellann established the Sammamish-based Chris Elliott Fund for Glioblastoma Brain Cancer Research. Since then, Dellann has led the effort to raise more than $330,000 for brain cancer research at the Dana-Farber Cancer Institute.

“One of the things I’m most proud of is that Chris said, ‘Do something about this disease.’ And we have,” Elliott said.

Glioblastoma is a highly aggressive, lethal brain cancer, said Dr. Ron DePinho, who sits on CEF’s medical advisory board. DePinho is the chair of the Human Genome Project, a Harvard University professor, a consultant to the American Cancer Society and director of the Applied Cancer Center at Dana-Farber.

“As it grows, it destroys normal brain tissue,” DePinho wrote in an e-mail to Elliott. “This disease extracts a very significant toll on our society as it affects a relatively young population. Many thousands die each year due to a lack of cure. The picture is now changing, thanks to a series of remarkable advances in glioblastoma research with seed support provided by the CEF.”

Shortly before Ted Kennedy’s recent seizure and subsequent diagnosis of glioblastoma, Elliott attended a session of the Health, Education, Labor and Pension Committee that Kennedy led. He planned the meeting to introduce new legislation to make it easier for people seeking preventative cancer treatment and access to clinical trials.

“It is such an unfortunate diagnosis,” said Elliott, who was in Washington DC to attend National Brain Tumor Action Week. “However, if he ever desired to move forward his idea for cancer treatment, he just did it.”

Kennedy underwent surgery at Duke University and is participating in a clinical trial through Duke with the help of Dana-Farber, she said.

“He went a route other than the standard treatment, and that sends a message to America,” Elliott said.

The standard procedure once someone is diagnosed with glioblastoma is radiation and a drug called Temodar. However, that plan only works for 30 percent of patients, Elliott said. Even if it is effective, patients have to be removed from the plan at the end of two years because of possible side effects.

The Chris Elliott Fund (CEF) funded a portion of the research at Dana-Farber that helped discover the genes that mutate and cause high-grade astrocytomas and glioblastomas, she said.

An astrocytoma is similar to a glioblastoma, but less malignant. When the less-cancerous tumors are surgically removed, they often grow back later as a stronger, more malignant glioblastoma, Elliott explained.

The CEF also has been credited with funding a portion of the research that showed that the molecular structure of each person’s brain cancer is different, Elliott said. That distinct difference is a key discovery because it proves that a “one-size-fits-all” treatment plan is not optimal.

Doctors at nationally recognized brain tumor centers are now able to test the molecular structure of a patient’s tumor, in order to develop a specific treatment plan.

“Chris did not have that done. When we learned about it and asked about it (in Washington), we were denied,” Elliott said.

An ongoing study at Dana-Farber and the National Institute of Health that the CEF is helping to fund is examining the different genes that cause glioblastoma and astrocytoma, to determine which ones come up the most often.

CEF spokeswoman Anne Marie Budo pointed out that while CEF’s primary focus is on glioblastoma and astrocytoma, much of the work it has funded advances general cancer research.

Between 17,000 and 20,000 new cases of high-grade astrocytoma and glioblastoma will be diagnosed in the United States, about 500 of which will most likely be here in the Seattle area, she said.

In addition to raising money for research, another big focus for the CEF is informing patients about their rights, options and treatment possibilities.

If needed, CEF helps patients get another opinion — quickly. When a patient or family member contacts the organization for help, Elliott has them send their latest MRI and medical files via FedEx to Dr. Patrick Wen at Dana-Farber.

“Literally within 24 hours, he will reach out to the family and give that second opinion,” she said. “That’s important, because lots of people say, ‘My neuro-oncologist said there’s nothing more I can do,’” Elliott said.

Chris Elliott was told that several times, and was initially given 12 months to live. Through Dellann Elliott’s research and help from doctors and surgeons at Dana-Farber, he lived 22 months after his diagnosis.

“You need to get that third, fourth, fifth opinion. ... This is brain cancer,” she said. “You trust your doctor. You think they’re giving you the best care possible — and they probably are (for that facility) but that doesn’t mean there’s not better care out there.”

One such possibility for a new course of treatment is the combination of Avastin and Carboplatin, which is currently being fast-tracked at the Food and Drug Administration. It’s a method that isn’t widely available or prescribed but can be administered if patients press their doctor.

“It’s a knowledge thing — you have to know to ask,” Budo said.

In addition to supporting and educating patients, Elliott said, one of the organization’s new aims is trying to connect with neuro-oncologists throughout the area in an effort to share resources, knowledge and improve treatment for patients.

“My hope with the CEF is to reach out to all the neuro-oncologists in the state of Washington about collaborating with nationally recognized brain tumor centers to aid in getting the best care for the every patient and their family,’” Elliott said. “I think Chris would be extremely happy to know that he has done something about this disease.”

Upcoming CEF events:

• Sammamish Chamber of Commerce, 11:30 a.m. on Thursday, June 19: Dellann Elliott will talk about the research that the Chris Elliott Fund has helped support, as well as her own family’s experience fighting cancer and her hopes for the future. Visit www.sammamishchamber.org to register.

• Yearly Teresa LeDoux-Peterson Bike Ride, 9 a.m. Sunday, Aug. 10 starting from the Red Hook Brewery in Woodinville.

• Seventh annual Chris Elliott Fund Golf Tournament, 1 p.m. Friday, Oct. 3 at the Golf Club at Newcastle. Dinner and auction to follow at 6 p.m. Visit www.chriselliottfund.org to register.

On the Web:

• Chris Elliott Fund: www.chriselliottfund.org

• Dana-Farber Cancer Institute: www.dana-farber.org

• Podcast on National Public Radio with Dr. Ron DePinho: www.npr.org/dmg/dmg.php?prgCode=TOTN&showDate=26-Jan-2007&segNum=3&mediaPref=WM

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