Monday, June 30, 2008

Nonprofits Find and Fund Big Ideas in Small Spaces

Katie Hood, Michael J. Fox Foundation (MJFF) CEO in a recent blog post discusses getting higher returns on medical research philanthropy, and asserts that “private philanthropists need to break out of the collective comfort zone of a traditional, 'academics-only' approach.” Her organization and several others were profiled at the recent Biotechnology Industry Organization convention in two panels and via the partnering database. Although the models pioneered by groups such as MJFF, Cystic Fibrosis Foundation (CFF) and Multiple Myeloma Research Foundation continue to garner attention and are looked to as best practices, Ms. Hood also raises the important question of why there are not more examples being proliferated.
Our recently released report, Entrepreneurs for Cures, focuses on the need for and importance of more examples that will lead to medical breakthroughs, and notes that, “The measure of our success is lives saved and suffering diminished – not the number of grants awarded, publications presented, or laboratory space acquired.” This report highlights how nonprofit disease research organizations are finding and funding big ideas, effectively paving the way for developing new business models to accelerate research.
At an all-day session at the Institute of Medicine (IOM) on June 23, 2008, I spent the day hearing speakers on the topic of “Breakthrough Business Models: Drug Development for Rare and Neglected Diseases and Individualized Therapies,” which spotlighted nonprofits as innovators in translating research from basic science to therapies for patients. A wide variety of topics were raised:
  • for academic researchers: How can we get beyond the need to only share results via peer-reviewed journals?
  • for diseases of the developing world: how can we raise the incentives to address them?
As part of this IOM meeting, I moderated a panel on “Strategies for Facilitating Sharing of Research Materials and Data” where Michael Mowatt, Director of the Office of Technology Development of NIH’s NIAID, talked about the imperative to share via repositories and other means. He highlighted the example of the Bill & Melinda Gate’s Foundations AIDS vaccine collaborations as an example to look to. Sharon Terry, President & CEO of the Genetic Alliance urged the audience to “Learn the rules so you can break them properly” and recounted the experience at the Alliance in “herding cats” to get research not just from bench to bedside but to get it into practice. She reflected that one way they herded cats was by moving the food. That would certainly get my cat’s attention. The Genetic Alliance repository was described as an “ebay” for samples. Laurie Ryan, Program Director of Alzheimer's Disease Clinical Trials at the National Institute on Aging, NIH, discussed the Alzheimer’s Disease Neuroimaging Initiative, an important public-private partnership which is gaining increased international attention.

In a panel on intellectual property, Craig Sorensen, Senior Director of Strategic Research Alliances at Vertex Pharmaceuticals outlined their work and collaborations in cystic fibrosis with CFF, Huntington’s disease with the Cure Huntington’s Disease Initiative, and tuberculosis and said that “industry is hiding behind cliches about failure and is doing a lot of running and staying in place.”

As Queta Bond, President of the Burroughs Wellcome Fund said at the end of the day, “We need to let more flowers bloom.” At FasterCures we’ll keep figuring out if we can help the process along and provide as much fertilizer as we can…
- Margaret Anderson, COO, FasterCures
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