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Panel Detail

Disruptors' Academy: What's next for venture philanthropy?

Monday, November 02, 2015
2:45 PM - 4:00 PM
GH - Empire Ballroom V


Christopher Austin, Director, National Center for Advancing Translational Sciences, National Institutes of Health
Kenneth Hobby, President, Cure SMA
Annie Kennedy, Senior Vice President, Legislation & Public Policy, Parent Project Muscular Dystrophy
Todd Sherer, CEO, The Michael J. Fox Foundation for Parkinson's Research


Louis DeGennaro, President and CEO, Leukemia & Lymphoma Society

What's next for venture philanthropy?
Disruptors bring 'passion capital' to the search for cures

Venture philanthropies are emerging as strong and strategic partners in the medical research system. Five disruptive research leaders discussed "What's next for venture philanthropy?" at Partnering for Cures, including how to define venture philanthropy and how foundations prioritize among the competing opportunities to invest their time and resources.

Louis DeGennaro of the Leukemia & Lymphoma Society, the moderator of the session, said that some people describe venture philanthropy as "passion capital," and he asked panelists how they would define the concept.

Todd Sherer pointed out that there is no "one-size-fits all" approach to venture philanthropy. To the Michael J. Fox Foundation for Parkinson's Research, it means taking a holistic look across the field and doing whatever it takes to represent patients to make sure therapies are moving forward. Sherer added that a venture philanthropy can be a centralized, motivated player that can put patients at the center of the research process and take on high-risk projects.

Annie Kennedy said that one of the goals of Parent Project Muscular Dystrophy (PPMD) is to figure out how to incentivize drug development, but venture philanthropy is more than that: "It's about investing in relationships that yield results."

One concept that ties these venture philanthropies together is that they all fund medical research. DeGennaro said that when people approach him about funding, he asks where the science is on the spectrum of development. He asked the panelists how they decided where their dollars go.

Sherer agreed with DeGennaro, saying that first, the foundation tries to understand the current state of science and research, as well as what the patient needs are. Then the foundation can determine whether the challenges are scientific in nature or if there are other issues that need to be addressed.

Cure SMA's Kenneth Hobby said that the key to successful research funding is deciding when to advance and when to pull back. For example, his foundation previously funded clinical trials directly. Now that more pharma companies are interested in funding them, the foundation is able to focus on other areas.

Kennedy described a similar evolution. When PPMD was founded, there was a dearth of muscular dystrophy projects in the pipeline, and now there is a robust therapeutic pipeline. "One of strengths of PPMD is that we are conveners," she explained. It aims to find companies to which it can facilitate a hand-off. Now that there are more than 30 companies in this space, the foundation can turn its attention to other areas of need, such as identifying quantifiable data that are meaningful to the patient community.

While not a venture philanthropist himself, panelist Christopher Austin of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health works closely with nonprofit funders of medical research, which have played an essential role in the translational research process. One way in which NCATS is similar to venture philanthropies is that it has a clear goal in mind, uses business practices to track that goal, and can change directions if it's not working. Like venture philanthropies, NCATS aims to de-risk science to encourage more development of treatments and cures.

"We view our disease as the process itself," said Austin. He said the center's mission is to get more treatments to more patients more quickly, which he does by working on issues that "bedevil" the translational research process. "There is no shortage of opinions about what the problems are."

Although there may be no single definition of "venture philanthropy," all panelists cited passion and a focus on patients as being critical in their work.

"All of us are known as disruptors," said Austin. "We need to stay laser-focused on the science and stay laser-focused on the patients."

"The passion [that venture philanthropies have] is critical," said Kennedy. "Our job is to educate and empower the community... and to make sure people understand where being disruptive or when being disruptive makes sense."

As these five disruptors know, taking this innovative approach to the medical research process may be just what is needed to advance treatments for the patients they serve.

As Hobby said, "We're focused on being in this business until there's a cure."