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Passion, Hope Rule As Startups, Foundations Meet

Christy Shaffer, Ph.D. (left), managing director of Hatteras Venture Partners, moderates compelling discussion of cystic fibrosis treatment success story with Robert Beall, Ph.D. (right), CFF president and CEO, and Eric Olson, Ph.D., vice president and CF program leader for Vertex Pharmaceuticals, the Boston company now selling the new drug.

A growing niche in banking is capturing the imagination of life-science researchers and entrepreneurs. And it’s driven by a passion to speed the search for treatments, even cures, for rare and deadly diseases.

Some bioscience entrepreneurs were downright giddy Thursday, thinking of ways they might be able to tap into these new kinds of bank loans being discussed at the Southeast Venture Philanthropy Summit in Chapel Hill.

These are not traditional bank loans, of course, because traditional banks have demonstrated that they’d rather go broke making real estate bets than funding even the most promising life-science startups.

Instead, it was the concept of biobanks that caught the attention of the 300-plus people at the unique regional Venture Philanthropy Summit organized by the North Carolina Biotechnology Center. The event was co-hosted by NCBio, BioFlorida, Georgia Bio, Southeast Bio and Virginia Bio.

How Biobanks Work

Biobank depositors willingly, hopefully, invest their own blood, cells, tumor tissues, to streamline the work of research scientists who might save lives with their findings.

Biobanks are just one of the high-value ways that non-profit disease-fighting foundations showed Summit attendees they are helping academic researchers and bioscience companies get the job done.

Sure, money is important to help startups survive the much-discussed “valley of death” that entrepreneurs must cross – the hardscabble landscape separating a new discovery from investment funding that can bring it to life and the marketplace.

And most of the 31 foundations at this first-ever Southeastern regional gathering do put cash where their mission is. The Cystic Fibrosis Foundation (CFF), for example, has plunked more than $1 billion of the charitable donations it collects to pay for the best research into the complicated lung disease.

Success Story Gets Standing Ovation

Luncheon crowd is spellbound over successful collaboration of foundation, corporate partners in bringing breakthrough drug to the market.

The effort got a standing ovation from the crowd after a lunchtime keynote speaker panel described the breakthrough that recently launched the first effective CF therapy. Christy Shaffer, Ph.D., managing director of North Carolina investment firm Hatteras Venture Partners, moderated the compelling exchange between Robert Beall, Ph.D., CFF president and CEO, and Eric Olson, Ph.D., vice president and CF program leader for Vertex Pharmaceuticals, the Boston company now selling the new drug.

Their story of working closely for this goal of preventing the death and disability was the underlying, uplifting theme of the entire Summit. Theirs, however, was especially poignant to the crowd because it’s a success story. Even though the new Vertex drug currently treats only a small percentage of people with CF, it has opened doors to more understanding of the disease and an expectation for more drugs relatively soon.

Like the CF collaboration with Vertex and others, many foundations offer collaborators not only direct financial support and valuable biobank access, but also databases of valuable information about people who have the disease they’re fighting. They even work with officials at the U.S. Food and Drug Administration to address questions and concerns early, speeding the approval process.

Origins, Urgency Often Personal

These foundations also bring an intangible, nonetheless palpable, passion to the task at hand. Often it’s because those involved, or loved ones, have the rare or deadly disease they’re challenging.

Former Duke University student Josh Sommer, of Durham, for example, created the Chordoma Foundation after he learned he had the extremely rare form of cancer that affects the bones of the spine. Because it’s a rare disease, it’s a small foundation. But as executive director, Sommer has overseen creative ways to leverage a limited budget. For example, by offering a simple $10,000 prize, he got hundreds of researchers to provide his foundation valuable screening tools.

Long-time Durham biotech entrepreneur Max Wallace, CEO of the small Accelerate Brain Cancer Cure (ABC2) foundation, is also rolling out a unique promotion to further the cause that brought him out of retirement.

“Our foundation strategy is reliant on sequencing,” he said. “We're realizing that brain cancer is very broad, and we've been using very dull tools on it.”

So the organization is developing a “1,000 Coupon Project” to give 1,000 brain cancer patients a chit entitling them to free genetic sequencing of their brain tumors. It’s aimed at gathering biobank information from a widely diverse patient population – including those who wouldn’t otherwise be able to pay the $60,000 for the assay that isn’t yet covered by insurance.

“It might not help them yet, but it can provide data. And that will be key. In our disease its not the primary cancer that kills the patients, it's the recurrent cancer, which keeps changing because of chemotherapy and other factors.”

Though Wallace doesn’t have brain cancer, he has lost a loved one to its ravages. So he was delighted to help make the Summit successful when asked by NCBiotech’s Peter Ginsberg to join in. Ginsberg had organized a smaller venture philanthropy event in 2011 that included Sommer and Wallace. Tellingly, that 2011 event, like Thursday’s regional expansion, were sellouts.

And for Wallace, the passion hasn’t dwindled. He reminded the crowd that he can’t slow down because brain cancer waits for no one.

“Right now my patients die within 12 months,” he said. “I never forget that 41 people die every day in my space.”

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