B
Workshop on Venture Philanthropy Strategies Used by Patient Organizations to Support Translational Research

October 3, 2008

Beckman Center

Irvine, CA


Meeting Goals

  • Convene a group of key stakeholders and experts representing a variety of patient organizations involved in venture philanthropy-supported translational research to identify and discuss best practices used that may improve efficiency and effectiveness. Areas that will be discussed include

    • criteria used to determine whether there is sufficient evidence to justify moving into translational research—both translational research from basic to clinical and from clinical research toward practice recommendations for the development of a novel drug and/or biomarker/diagnostic;

    • organizational structure, financial models, legal issues;

    • partnerships, data sharing, and IP; and

    • communication strategies.

Workshop Scenario

Session specific scenarios were developed to help guide remarks and frame the discussions and goals for the workshop. At the heart is a hypothetical patient organization, the Colten Foundation. An individual from this foundation is seeking advice on establishing a translational research program for the development of a novel drug and/or biomarker/diagnostic. The foundation is



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B Workshop on Venture Philanthropy Strategies Used by Patient Organizations to Support Translational Research October 3, 2008 Beckman Center Irvine, CA Meeting Goals • Convene a group of key stakeholders and experts representing a variety of patient organizations involved in venture philan- thropy-supported translational research to identify and discuss best practices used that may improve efficiency and effective- ness. Areas that will be discussed include criteria used to determine whether there is sufficient evi- o dence to justify moving into translational research—both translational research from basic to clinical and from clinical research toward practice recommendations for the develop- ment of a novel drug and/or biomarker/diagnostic; organizational structure, financial models, legal issues; o partnerships, data sharing, and IP; and o communication strategies. o Workshop Scenario Session specific scenarios were developed to help guide remarks and frame the discussions and goals for the workshop. At the heart is a hypothetical patient organization, the Colten Founda- tion. An individual from this foundation is seeking advice on es- tablishing a translational research program for the development of a novel drug and/or biomarker/diagnostic. The foundation is 59

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60 VENTURE PHILANTHROPY STRATEGIES trying to plan for and think about the challenges they may en- counter and is interested to learn more about how your organiza- tion tackled them (where applicable); other best practices, general advice, and lessons learned would also be extremely helpful. To the best of your knowledge there is no resource currently available that provides advice or “best practices,” so it is impor- tant that you convey the most critical information that can assist the foundation with its series of decision matrices. The following questions help frame the context: 1. What advice would you want to provide to this individual and his or her organization? 2. What do you wish you had known then that you know now? 3. If I had only known X, I could have avoided Y. 8:30 Welcome Introductions and Workshop Objectives TIMOTHY COETZEE, Chair Executive Director Fast Forward of the National Multiple Sclerosis Society 8:40 Opening Remarks: Opportunities for Foundation Support JOYCE NELSON President and Chief Executive Officer National Multiple Sclerosis Society 9:05 Challenges and Opportunities for Neurological and Mental Health Translational Research: Basic to Clinical Research and Clinical Toward Practice DENNIS CHOI Executive Director, Strategic Neurosciences Initiative Executive Director, Comprehensive Neurosciences Initiative Emory University

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61 APPENDIX B SESSION I: PREPARING FOR A TRANSLATIONAL RESEARCH PROGRAM Session Objective: Discuss the challenges and issues in the development of a translational research program for the development of either a novel drug or biomarker. Session I Scenario An individual from the Colten Foundation, a patient organization that has sufficient resources, has left you a voice mail asking for advice about how they should go about establishing and main- taining a productive and efficient translational research program. They are particularly interested in the criteria considered and the decision matrix you and your organization used to determine whether or not your organization would establish a formal trans- lational research program for the development of a novel drug and/or biomarker/diagnostic. 9:20 Introduction to the Session MARIA CARRILLO, Session Chair Director, Medical and Scientific Relations Alzheimer’s Association 9:25 Panelist Remarks RICHARD INSEL Executive Vice President, Research Juvenile Diabetes Research Foundation KATIE HOOD President and Chief Executive Officer The Michael J. Fox Foundation for Parkinson’s Research CELIA DOMINGUEZ Vice President, Chemistry CHDI Management, Inc.

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62 VENTURE PHILANTHROPY STRATEGIES 10:05 Respondent Panel Discussion LOUIS DEGENNARO Chief Scientific Officer Leukemia & Lymphoma Society CYNTHIA JOYCE Executive Director Spinal Muscular Atrophy Foundation LUCIE BRUIJN Vice President of Research Amyotrophic Lateral Sclerosis Association 10:20 Discussion with Attendees MARIA CARRILLO, Moderator Director, Medical and Scientific Relations Alzheimer’s Association 10:40 BREAK SESSION II: ORGANIZATIONAL STRUCTURE, LEADERSHIP, AND FINANCIAL MODELS Session Objective: Explore several elements of how a program should be organized to ensure appropriate expertise and leadership is available. Examine a variety of organizational and financial models that may provide optimal support of translational research programs. Session II Scenario The individual from the Colten Foundation who previously spoke to you has used your decision matrix and decided to move ahead with a formal research program. Given how helpful you originally were, they are now asking for more information. In particular they are interested in hearing about models of

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63 APPENDIX B organizational and leadership structure and various financial models that you have found to be effective and efficient. 10:55 Introduction to the Session TIMOTHY COETZEE, Session Chair Executive Director Fast Forward of the National Multiple Sclerosis Society 11:00 Panelist Remarks JONATHAN SIMONS President and Chief Executive Officer Prostate Cancer Foundation CYNTHIA JOYCE Executive Director Spinal Muscular Atrophy Foundation 11:40 Respondent Panel Discussion JONATHAN JACOBY Chief Operating Officer CollabRx, Inc. LINDA VAN ELDIK Professor, Department of Cell and Molecular Biology Northwestern University Feinberg School of Medicine 11:50 Discussion with Attendees TIMOTHY COETZEE, Moderator Executive Director Fast Forward of the National Multiple Sclerosis Society 12:15 LUNCH

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64 VENTURE PHILANTHROPY STRATEGIES SESSION III: LEGAL, ACCOUNTING, AND PROCESS ISSUES Session Objective: Explore the challenges and opportunities in legal, ac- counting, and associated process issues that a foundation would need to consider in conducting venture philanthropy translational research pro- grams. Session III Scenario You are now very popular with the Colten Foundation! They just sat down with their start-up team and are trying to think about some of the new challenges they may face in terms of appropri- ate accounting and legal practices, and other process-related is- sues. They have once again called you to learn more about how you and your organization have navigated these issues. 1:00 Introduction to the Session TIMOTHY COETZEE, Session Chair Executive Director Fast Forward of the National Multiple Sclerosis Society 1:05 Panelist Remarks ANDREA TOBIAS Portfolio Advisor Fast Forward, LLC KENNETH SCHANER General Counsel Kenneth Schaner, PC PETER HEINECKE Chief Business Officer Experimed Bioscience, Inc.

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65 APPENDIX B 1:45 Respondent Panel Discussion CAROL MIMURA Assistant Vice Chancellor Intellectual Property & Industry Research Alliances University of California, Berkeley JENNIFER TAYLOR Associate Director, Program Management Head of External Alliances Genomics Institute of the Novartis Research Foundation 1:55 Discussion with Attendees TIMOTHY COETZEE, Moderator Executive Director Fast Forward of the National Multiple Sclerosis Society SESSION IV: PARTNERSHIPS, DATA SHARING, AND IP Session Objective: Examine a variety of strategies for partnering with nonprofit organizations, the NIH, and industry. Discuss what policies have been effective in facilitating the efficient management of data shar- ing and IP. Session IV Scenario The Colten Foundation has previously been working with just a couple of other researchers or companies, but realizes that in or- der to develop an effective research program they will need to expand their portfolio of collaborators (e.g., nonprofit organiza- tions, the NIH, therapeutic/diagnostic industry). Of course, this results in more questions than answers, especially around issues of data sharing and IP. They again turn to you to help answer their questions. Are there any common resources available? What are some challenges they may encounter, and how your organization tackled them? How and when should strategic col- laborations be established or expanded?

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66 VENTURE PHILANTHROPY STRATEGIES 2:10 Introduction to the Session JUDY ILLES, Session Chair Professor Neurology University of British Columbia 2:15 Panelist Remarks MARGARET ANDERSON Chief Operating Officer FasterCures SHARON HESTERLEE Vice President, Translational Research Muscular Dystrophy Association TRICIA BROOKS Managing Director, Alliance Development Biotechnology Industry Organization 2:55 Respondent Panel Discussion SUSAN WOLF McKnight Presidential Professor of Law, Medicine, & Public Policy University of Minnesota School of Law RUSTY BROMLEY Chief Operating Officer Myelin Repair Foundation 3:05 Discussion with Attendees JUDY ILLES, Moderator Professor Neurology University of British Columbia 3:20 BREAK

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67 APPENDIX B SESSION V: COMMUNICATIONS Session Objective: Explore effective communication strategies that can be used to disseminate information on research and other scientific pro- gress to potential and current funders as well as to constituents, while addressing the challenges of funder and constituent expectations. Session V Scenario The individual from the Colten Foundation is calling again, and has promised that this will be the last time she will call, but she has one last set of very important questions. Based on everything they have already learned from you, their translational research program is making great headway. They are very excited to share the progress with current and potential funders, as well as their constituents. But, she also recognizes the delicate balance that is needed between demonstrating progress and limiting false expectations. Therefore, she is very interested in discussing ef- fective communication strategies that you have used for dissemi- nating information on research and other progress to potential funders and constituents. 3:30 Introduction to the Session JONATHAN JACOBY, Session Chair Chief Operating Officer CollabRx, Inc. 3:35 Panelist Remarks SHARON TERRY President and Chief Executive Officer Genetic Alliance DAN ZENKA Vice President, Communications Prostate Cancer Foundation

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68 VENTURE PHILANTHROPY STRATEGIES CATHY CARLSON Senior Director, Research Information Research and Clinical Programs Department National Multiple Sclerosis Society 4:15 Respondent Panel Discussion SOPHIA COLAMARINO Vice President, Research Autism Speaks RANDALL CARPENTER Co-Founder, President, and Chief Executive Officer Seaside Therapeutics 4:25 Discussion with Attendees JONATHAN JACOBY, Moderator Chief Operating Officer CollabRx, Inc. SESSION VI: WRAP-UP DISCUSSION Session Objective: In addition to the areas that have already been dis- cussed, are there additional topics that require exploration? What “next steps” should the IOM’s Neuroscience Forum consider as it moves ahead in this area? How can we capture the innovation and ideas discussed dur- ing the meeting to assist you and new colleagues working in these areas? 4:40 Discussion with Attendees TIMOTHY COETZEE, Chair Executive Director Fast Forward of the National Multiple Sclerosis Society 5:00 ADJOURN