By Kevin Davies
November 24, 2009 | BOSTON -- After two whirlwind years as a consumer genomics pioneer highlighted by network television interviews and celebrity spit parties in ritzy locales, 23andMe co-founder Linda Avey is ready to spend some quality time in the kitchen. For a while, at least, that will be the nerve center of her determined endeavor to launch a new kind of medical foundation focusing on Alzheimer’s disease (AD) and appropriately called Brainstorm.
Avey’s announcement two months ago that she was stepping down from the consumer genomics pioneer 23andMe, which she co-founded with Anne Wojcicki, caught many by surprise. “I think it is best these things happen abruptly,” she said last week during a break at a Harvard conference on personalized medicine. “We’d really reached a point where we knew we had to change things up a bit. I’m the first to say I’m not the day-to-day management person – I’m a big picture idea person. I felt I’d made my imprint and I’d delivered my ideas, and it was time to hand it off to people who could execute and make things happen.” Avey remains a director of the company.
The idea for the Brainstorm Research Foundation was very much a Eureka moment, she said. “My husband got very excited and said we’ve got to come up with a name for it. I always get four steps ahead of myself. He said, ‘Don’t worry about the name. We’ll brainstorm it over the weekend.’ And then he went, ‘Brainstorm -- that’s it!’ It just made so much sense!”
Avey’s initial focus is on Alzheimer’s disease, which affected her father-in-law, but if the project works, she hopes to translate it to other disease areas. “It will be a new model, kind of an extension of what we’re doing at 23andMe, creating an outsourced potential to do research that really anyone can do. It’s all about creating novel cohorts and collecting the phenotypic information, which proves to be the most difficult thing.”
Testing Positive
“I myself am APOE4 positive, as is my husband,” Avey says candidly, referring to the genotype of her apolipoprotein E gene on chromosome 19 that confers a roughly threefold increased risk of AD. “But we have different family outcomes. This flies in the face of people saying your family history is all you really need to worry about. It’s just not true. If that were true, then every sibling would have about the same risk of getting a disease as their parents did, but we know that’s not true.”
“I’m happy to get [my E4 status] out there, because it hopefully will start removing the stigma. Having E4 is like a coin toss whether you’ll get [the disease], and it’s typically later onset.” She feels empowered “to do something while we can, hopefully to benefit our children. I’m very realistic about timelines in this area.”
Among Avey’s goals is to collect and leverage a wealth of phenotypic information from Alzheimer’s patients. “That’s the part I really want to innovate. How can you use existing social networks like Facebook to become a platform for collection in a very systematic way?” Avey intends to provide concrete ways of delivering information and merging that with genetic information. In a likely parallel, 23andMe has collected genotypes from more than 3,000 individuals with Parkinson's disease over the past two years, which are forming the basis for novel research studies.
“It’s a very difficult disease, obviously. That’s why I’m not saying I’m going to come out and cure the disease. It’s more about developing a longitudinal prospective – like a Framingham study for Alzheimer’s online – capturing these people before they’re so far gone, following them, building these communities so they’re there to support each other.” Avey envisions continually collecting information about patient phenotypes, and working on projects to identify rare gene variants that might be protective in families that are E4 positive but don’t develop the disease. “There’s a whole lot of data to be collected and mined.”
While novel therapeutics is a much more distant goal, Avey hopes that building a community could aid drug development efforts down the road. “If you had a very large cohort of individuals who were asymptomatic and have a family history, where you knew their genetic profiles across many genes… We might hopefully get to a point where they could become potential recruits for studies.”
For Avey, it’s a very personal crusade. “You lose the person, you know?” She recalls reading about a murder suicide in Spokane, Washington, because the husband couldn’t care for his ailing wife any more. “It just breaks your heart,” she says. “People shouldn’t be put in that position. It’s a call to arms.” There’s a political component to the cause as well. Avey describes funding for Alzheimer’s research as “dreadful” and “pathetic” compared to cancer and other diseases. "Early-onset [AD] people have a lot to offer for a good number of years that we have to start capturing," she says.
Funding Brainstorm will be a challenge, Avey admits. “I’m not going to be able to fund it like [Google co-founder] Sergey [Brin] and Parkinson’s disease, so I’ll need to raise the funding.” But she thinks it will be easier coming from the backdrop of a non-profit organization than a company like 23andMe. “There’s a big disconnect,” she admitted. “Even though we talk till we’re blue in the face that the company’s trying to do good and do well [financially], it just wasn’t resonating.”
Avey says there’s a lot of pent-up demand for new thinking in the Alzheimer’s field, and she intends to make Brainstorm “a Foundation 2.0 – it’s going to be very innovative, bleeding edge, but very virtual, very small. I want to run it out of my kitchen for as long as I can.”