The numbness was a symptom of a brain tumor. And almost as swiftly as the disease took away Ben's life, the couple started a foundation to help improve the treatment and diagnosis for people with gliomas, the most common form of brain tumor of which Ben Ivy succumbed.
The newly formed foundation has become the largest private funder of brain-tumor research in the country.
The Ben and Catherine Ivy Foundation has committed $12 million in 2008 to fund five research projects that could help improve the quality of treatment and diagnosis for patients with glioblastoma — the malignant tumor that affects Massachusetts Senator Edward M. Kennedy.
The foundation's first grant in July initiated a brain-cancer research consortium, The Ivy Genomics-Based Medicine Project, to better understand how genetic differences in individual brain tumors can help define the most effective treatment for each patient.
The collaboration includes nine U.S. institutions working together to characterize tumors by genetic type. The studies will test a spectrum of treatments to discern differences in response based on those genetic types — ground-breaking research in brain-cancer study, according to Rob Tufel, Ivy Foundation executive director, who was executive director of the National Brain Tumor Foundation in San Francisco.
In 2009, as part of collaboration with the Howard Hughes Medical Institute, the foundation will begin funding up to four fellowships annually for medical students engaged in neuro-oncology research.
Only 18,000 people are diagnosed with gliomas annually and the average life expectancy of a glioma patient is 12 to 18 months, he said. Tumor tissue is like gold; the foundation is exploring how researchers can collect and share tissue, he added.
"If brain cancer could be treated as a chronic illness, it would be a major shift [toward finding a cure]. If people could survive longer, we could study them," Tufel said.
Research funding for the disease has been largely overlooked, given the small number of patients, but the total devastation to its victims merits more consideration; Ben Ivy and others like him suffer mightily from the disease, Catherine Ivy said.
Ben developed paralysis, difficulty talking and difficulty seeing, she said. Then, personality changes and cognitive impairment took over.
"He was a very good business man — very intelligent with a lot of integrity and totally unafraid of risk. It was kind of a dirty trick. This gift was his brain and then he got this cancer," she said quietly.
"We were choosing between evils: The disease was killing him and the medications were destroying him," she added.
Ivy, who has also been a financial planner for 20 years, said she had little interest in science prior to her husband's illness. She had always planned to become involved in philanthropy; the illness provided the impetus, albeit bittersweet. The couple planned the foundation together while he was still alive, she said.
After Ben died, she spent a year traveling the world, visiting institutions dedicated to brain-tumor research. She wanted to learn everything she could about the illness that killed her husband so quickly, she said.
One thing soon became clear:
"You cannot buy a cure by any means," she said.
Ivy said she noticed duplication in research efforts and she wanted collaboration such as the Ivy Genomics-Based Medicine Project to help speed up research findings.
"Bringing the nine institutions together and sharing information, if they could leverage off what they've learned and not duplicate the failures, it will move the science along," Tufel added.
Ivy's personal approach also put the foundation on a fast track. She planned the consortium in February 2008 and had all of the players signed in June. She flew out the lawyers and prospective collaborators for face-to-face meetings, rather than relying on conference calls; and she took the same approach with the principal investigators who applied for research grants, asking questions that could help establish that the foundation has the correct milestones.
Ivy works 12 to 14 hours a day, seven days a week at the foundation. The foundation "is an area where my stubbornness and Type-A personality will come through because I won't give up," she said.
Thanksgiving will be three years since Ben Ivy died. The couple had only been married for five and a half years.
"We had a really wonderful marriage. ... Grief is a lot harder than I ever anticipated," she said.
But she counts her blessings.
"All of these people came into my life ... because of Ben and his strong spirit. ... His life spoke for itself, by his example. He had no regrets and I think that's an accomplishment. I think he'd be very pleased."
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