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Additional Event Info: Meeting Agenda | Working Group Breakout Descriptions | Directions to the American Cancer Society | Participant List
Meeting Info
This meeting covered the following topics:
- Beyond Co-Funding: Stronger Together Part II (Thursday)
- Supporting the Next Generation of Biomedical Researchers (Thursday)
- A Funder’s Role: Advancing Science Through Effective Communication (Thursday)
- Cost of Research: Are Current Fellowship Models Still “Current”? (Thursday)
- Evolving Intellectual Property Policy: Overview and Implementation (Friday)
Links to meeting presentations and speaker bios can be found by clicking on the day of the session below.
Meeting Agenda, Speaker Bios and Presentations (click on each day to expand)
March 28, Thursday
10:00 – 10:25 AM
(25 min)
Welcome to the Members Meeting
HRA Board Chair
Steve Rose, PhD
Senior Scientific Advisor | Foundation Fighting Blindness
Dr. Rose joined the Foundation Fighting Blindness as the Chief Scientific Officer in December 2004 and has transitioned to Senior Scientific Advisor, responsible for comp;any and academic interactions for scientific insights into iRDs. During his tenure as CSO, Dr. Rose established a seamless pipeline of science and clinical studies to move preventions and treatments into clinical trials while partnering with pharma and biotech to maximize potential commercialization.
Program Committee Co-Chairs
Margaret Flowers, PhD
Director, Scientific Communications and Grants | Breast Cancer Research Foundation
Chris Martin, PhD
Senior Science Program Officer & Director, Science Operations | The Kavli Foundation
Presenter
Gary Reedy
Chief Executive Officer | American Cancer Society
Chief Executive Officer Gary M. Reedy has dedicated his life to improving the health of people around the globe. He took that vision to the American Cancer Society, Inc., when he became chief executive officer in April 2015, but his work with the organization began more than 15 years ago, when he first became a volunteer leader with the organization. As the leader of the only global nonprofit organization attacking cancer from every angle, Gary has a unique platform from which to ignite the movement to save lives, celebrate lives, and lead the fight for a world without cancer. He has a laser focus on continuing the progress against cancer, refining volunteer and customer experiences, expanding stewardship and engagement, leading innovation, and improving access to care. Under his leadership, the organization has set a historic goal to double its annual research funding to approximately $240 million by 2021. This increase aims to dramatically grow what is already the largest and arguably most successful nonprofit research program in the nation. As a volunteer leader and cancer survivor, Gary has leveraged his firsthand experiences to transform the organization to better deliver on its lifesaving mission. He is a past chair of the American Cancer Society’s volunteer Board of Directors and past chair of the American Cancer Society Cancer Action Network SM (ACS CAN) Board. Gary also led the organization’s Board advisory committee on transformation, a pivotal effort for the organization. He first joined the American Cancer Society in 2000 as a member of the Board of Trustees of the former American Cancer Society Foundation. In recognition of his service, in 2014 Gary was elected as an Honorary Life Member of the organization. Prior to taking the helm of the American Cancer Society, Gary had a distinguished 37-year career as a healthcare business and advocacy leader, most recently as worldwide vice president, government affairs and policy, at Johnson & Johnson, where he spearheaded initiatives to influence global health policy. He previously devoted more than 25 years of his career to the business side of the industry, including senior leadership positions with SmithKline Beecham, Centocor, and Johnson & Johnson. During his tenure at Johnson & Johnson, Gary served as president of Ortho Biotech, a Johnson & Johnson company with annual revenues of more than $3 billion. Gary’s nonprofit experience includes current board appointments for the Campaign for Tobacco-Free Kids, the Tobacco-Free Kids Action Fund, the National Health Council, Research America, and Emory & Henry College. He is an active member of the Georgia Tech Advisory Board and the Atlanta Rotary Club, previously served on the C-Change board of directors, and was a charter member of the CEO Roundtable on Cancer. Gary is a graduate of Emory & Henry College and holds an honorary Doctor of Humane Letters degree from Arcadia University. He and his wife, Cindy, live in Atlanta, Georgia, and are the parents of two adult daughters, Katie and Stephanie.
10:25 – 11:45 AM
(80 min)
Beyond Co-Funding: Stronger Together Part II
Collaboration can be critical to advancing scientific discoveries; likewise, forging strong relationships with other biomedical research grant makers can elevate the work accomplished by each organization, advancing their respective missions. Building on the momentum from the previous Members’ Meeting in Durham, this session will continue the collaboration discussion, bringing new perspectives toward how organizations can work together to achieve their missions. This session will focus on how HRA members can work together to embark on large initiatives targeting specific scientific questions and/or collaborate to achieve mission-driven projects to advance their respective fields. The session will conclude with an update on the status of the upcoming Collaboration Program and Workshop to be held on May 1-2, 2019.
Moderator
Shannon Gallagher‑Colombo, PhD
Assistant Director, Scientific Review and Grants Administration | American Association for Cancer Research
Presenters
Lynne Garner, PhD
President | Donaghue Foundation
Lynne Garner, Ph.D., was appointed the Individual Trustee for the Donaghue Foundation in 2008 while maintaining the duties of President. As Trustee, Dr Garner works closely with the Institutional Trustee, U.S, Trust-Bank of America, to establish the mission and policies of the Foundation and to ensure that its programs and practices are congruent with Ethel Donaghue’s purpose for the Foundation. As President, she is responsible for the overall operation of the Foundations programs, including working with the Foundation’s advisers and the research and philanthropic communities to develop new Foundation initiatives. Prior to her position at the Foundation, she worked at the Connecticut Office of Health Care Access, the Department of Mental Health and Addiction Services, and the Massachusetts Department of Mental Health doing program evaluation and quality management. Lynne is also a trustee of the Ethel F. Donaghue Trust for Elizabeth Park. She is a member of the Health Research Alliance Board of Director and co-leader of the HRA Health Services Research interest group.
PresentationHeather Snyder, PhD
Senior Director, Medical & Scientific Relations | Alzheimer’s Association
Heather M. Snyder, Ph.D., is Senior Director of Medical and Scientific Operations at the Alzheimer’s Association. Dr. Snyder manages the Association's International Research Grant Program, through which the Association funds research around the world. She oversees the Association’s relationship with the leading disease journal in clinical neurology, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, and its two companion open access journals. She is responsible for implementing the Alzheimer’s Association Women’s Alzheimer’s Research Initiative and leads the Association’s efforts to understand the role of vascular factors in Alzheimer's and dementia. Dr. Snyder earned a Ph.D. from Loyola University Chicago Stritch School of Medicine, and a bachelor’s degree in Biology and Religious Studies from The University of Virginia.
PresentationAndres Hurtado-Lorenzo, PhD
Senior Director of Translational Research | Crohn’s & Colitis Foundation
Dr. Andres Hurtado-Lorenzo is the Senior Director of Translational Research at the Crohn's and Colitis Foundation. He is responsible for planning and oversight the Foundation's translational research portfolio in the fields of Precision Medicine, Genetics, Microbiome, Fibrosis, and Venture Philanthropy to advance development of IBD therapeutics, diagnostics, devices and other products that can benefit patients with Crohn’s disease and ulcerative colitis. He is a translational scientist leader with proven success directing multidisciplinary teams in the biotech and pharmaceutical industry (Wyeth, Pfizer, Proteostasis Therapeutics), resulting in the development of drug candidates currently tested in clinical trials. He obtained his Ph.D. in Molecular Medicine from the University of Manchester in the UK, where he pioneered work in viral gene therapy for neurodegenerative diseases. He completed his postdoctoral work at Harvard Medical School, Massachusetts General Hospital and Columbia University, where he conducted groundbreaking research on autophagy and other protein degradation pathways.
Presentation11:45 AM – 1:05 PM
(90 min)
NETWORKING LUNCH
1:05 – 2:35 PM
(90 min)
A Funder’s Role: Advancing Science Through Effective Communication
Science communication is part of a scientist's everyday life, and in order to be an effective scientist, one must be an effective communicator. Scientists must give talks, write papers and proposals, communicate with a variety of audiences, and educate others. In this session, we will explore the goals and objectives of effective scientific communication. How can we as funders do our part to equip our grantees with the tools and resources to become effective communicators and ambassadors for their important work? We will hear from Laura Lindenfeld of the Alan Alda Center for Communicating Science on best practices and ideas for training our grantees to communicate their science as well as Yael Fitzpatrick from Gazelle Design Consultancy on training scientists how to visually communicate their research. Finally, we will hear from Elizabeth Christopherson from the Rita Allen Foundation, who will share how they have been supporting communications training for their Scholars.
Moderator
Kristen Wehling, MPH
Program Coordinator | American Cancer Society
Kristen Wehling, MPH is a Program Coordinator for the Extramural Research department at the American Cancer Society. Her focus is on coordinating all aspects of grant administration and peer review for the Translational Cancer Research program. She helps to support early stage scientific investigators through the grant review process. Prior to joining the Extramural Research department at ACS, Kristen worked with ACS as a Community Development Manager for Relay For Life in Michigan, followed by coordinating communicable disease programs for a local health department. Kristen received her Bachelor of Arts degree in English at the University of Michigan in 2012 and then went on to attend The George Washington University Milken Institute School of Public Health where she received her Master of Public Health in 2014.
Presenters
Laura Lindenfeld, PhD
Executive Director | Alan Alda Center for Communicating Science
Dr. Laura Lindenfeld is Executive Director of the Alan Alda Center for Communicating Science and Interim Dean of the School of Journalism at Stony Brook University. She holds a Ph.D. in cultural studies from the University of California, Davis. As the Alda Center Director, she oversees a dynamic organization that has trained over 12,000 scientists worldwide and introduced over 40,000 to the Alda Method®. The Center provides international leadership in conducting and connecting research and practice to advance clear and vivid science and medical communication. As a communication researcher, her work draws inspiration from the idea that we can make better, more informed decisions about how we shape our collective future. She is passionate about supporting scientists to communicate their work in more direct and engaging ways. Her work focuses on how we can advance meaningful, productive interactions with communities, stakeholders and decision-makers by strengthening linkages between knowledge and action. Much of Laura’s research focuses on environmental and sustainability communication. Her work seeks to understand how we can support effective stakeholder engagement and build strong interdisciplinary teams and communicate our science more effectively and persuasively. Laura’s work has appeared in a range of journals such as Science Communication, Ecology & Society, Environmental Communication, Sustainability Science, Communication and Critical/Cultural Studies, and Food & Foodways. Feasting Our Eyes. Food Films, and Cultural Identity in the United States (2016), her co-authored book with Fabio Parasecoli, was published by Columbia University Press.
PresentationYael Fitzpatrick
Consulting Art Director and Brand Manager | Gazelle Design Consultancy
Yael Fitzpatrick is an art director, publications designer, sometimes writer, and science communicator. She spent the first part of her life concentrating on math and the sciences, and then took an unexpected detour into the arts. Things came full circle once she realized she could focus on visually communicating the content she loves. The former Art Director for the Science family of journals and Manager of Design & Branding for the American Geophysical Union, Yael now runs Gazelle Design Consultancy, specializing in art direction, design, and brand management for the scientific and scholarly publishing space. She’s on Twitter @GazelleInDminor.
PresentationElizabeth Good Christopherson
President and Chief Executive Officer | Rita Allen Foundation
Elizabeth Good Christopherson is President and CEO of the Rita Allen Foundation, which invests in transformative ideas in their earliest stages. The foundation supports biomedical scholars doing pioneering research, seeds innovative approaches to fostering informed civic engagement, and develops knowledge and networks to increase the effectiveness of the philanthropic sector. Ms. Christopherson is guiding the foundation through a period of rapid growth, including building new investments and coalitions to strengthen the role of science and evidence in civic dialogue and decision-making, particularly around contentious issues. As part of its Civic Science initiative, the Foundation developed a partnership with RTI International and the Aspen Institute to create the Misinformation Solutions Forum to bring together academic researchers, technology professionals, data scientists, journalists, educators, community leaders, and funders to develop new approaches for curbing the spread of misinformation. A contributing author to Oxford Handbook on the Science of Science Communication (2017), she will moderate a panel next month at the National Academy of Sciences’ Colloquium “Advancing the Science and Practice of Science Communication: Misinformation About Science in the Public Sphere.” Ms. Christopherson’s board service includes the Science Philanthropy Alliance, Philanthropy for Active Civic Engagement (PACE), iBiology, and Media Impact Funders. She has juried international media competitions and is the recipient of five honorary degrees as well as national awards for innovative digital media applications and public service.
Presentation2:35 – 3:00 PM
(25 min)
Break
3:00 – 4:00 PM
(60 min)
Cost of Research: Are Current Fellowship Models Still “Current”?
As new discoveries and technological advancements continue to enhance our scientific knowledge, the question arises as to whether current funding models are keeping pace in this rapidly changing environment. Indeed, the advent of sophisticated approaches to solve scientific questions, as well as policies around sharing this information with other researchers or the public, results in higher costs for laboratories. Likewise, the training period for mentored investigators has lengthened as they compete for independent positions, as has the time needed to effectively complete and analyze complex experiments, leading to the need for prolonged research support. This session will focus on the changing research landscape, and how this impacts the value of current funding models. We hope to shed some light into what are considered the current “industry standards” with respect to specific postdoctoral funding mechanisms, and to provide insights into what decision points could lead to change, if an organization were interested in updating its grantmaking approach.
Moderator
Jenna Koschnitzky, PhD
National Director of Research Programs | Hydrocephalus Association
PresentationPresenter
Julie Fabsik-Swarts, MS, CFRE, CAP
Executive Director | National Postdoctoral Association
Julie Fabsik-Swarts, MS, CFRE, CAP is a skilled and dynamic nonprofit leader with over 30 years of experience. Raised in New York City, Julie has worked for such prestigious organizations as The Pennsylvania State University, the US Olympic Committee, Girl Scouts of San Diego and Imperial Counties, the Seattle Organizing Committee of the Goodwill Games, the Purple Heart Foundation, Lock Haven University of Pennsylvania, the University of Pennsylvania, and the American College. Proof of her passion for and expertise in the athletics and nonprofit worlds are demonstrated by her experience in such prestigious positions as the Executive Director of an Olympic sport and the Chief Development Officer at the National Purple Heart Foundation. Further validation of this passion is evidenced by Julie’s experience in having served on numerous nonprofit Board of Directors including the Philadelphia Committee on City Policy, Women in Development and the National Association of Women’s Gymnastics Judges. Additionally, Julie earned a Bachelor of Science from the San Diego State University and a Master of Science from the University of Massachusetts at Amherst. Julie is a Certified Fundraising Executive (CFRE), a Chartered Advisor of Philanthropy (CAP) from the American College, and a certified nonprofit executive from LaSalle University. She is currently the Executive Director of the National Postdoctoral Association. In this role she has helped grow the organization. Additionally, she has worked to advocate for postdoctoral researchers on all levels. On the personal side, Julie is a nationally rated Women’s Gymnastics Judge for USA Gymnastics and the NCAA and is certified to officiate collegiate tumbling and acrobatics competitions. She is a certified Master Scuba Diver and just celebrated her 25th wedding anniversary with her husband, Mike where she lives outside of Indianapolis, IN.
Presentation4:00 – 5:30 PM
(90 min)
Supporting the Next Generation of Biomedical Researchers
Changes to policy and practice to attract and retain a vibrant biomedical research workforce have been recently suggested. In this session, HRA members will learn about the NAS Report, Breaking Through, which provides specific recommendations to overcome barriers facing the next generation of biomedical researchers. Additionally, we will hear about actions planned by the National Institutes of Health to recruit and retain a highly skilled research workforce. We will also identify potential opportunities for non-governmental funders to implement recommendations in the report.
Moderator
Kara Coleman, PhD
Project Director, Biomedical Programs | Pew Charitable Trusts
Kara Coleman manages Pew’s biomedical programs, which include the biomedical scholars, the Pew-Stewart scholars for cancer research, and the Latin American fellows. These initiatives support groundbreaking research by funding outstanding, competitively selected scientists early in their careers. As Project Director, Kara oversees the application peer review process for the four programs and manages planning of the program annual meeting and other community-building events. Before starting at Pew, Kara completed her Ph.D. in cell and molecular biology at the University of Pennsylvania and worked in medical communications where she specialized in rheumatology, gastroenterology, and oncology content development.
Presenters
Paula Stephan, PhD
Professor of Economics | Georgia State University Committee on the Next Generation Initiative, National Academy of Sciences
Paula Stephan is a Research Associate, National Bureau of Economic Research and Professor Emerita of Economics, Georgia State University. She is a Fellow of the American Association for the Advancement of Science and a member of the Board of Reviewing Editors, Science. Science Careers named Stephan their first “Person of the Year” in December of 2012 “honoring an individual who, during the past 12 months, has made an especially significant and sustained contribution to the welfare of early-career scientists.” Stephan is a Phi Beta Kappa Visiting Scholar for 2018-2019 academic year. Her research focuses on the economics of science and the careers of scientists and engineers. Her book How Economics Shapes Science was published by Harvard University Press, 2012 and has been translated into Chinese and Korean. She has published in such journals as Science, Nature, the American Economic Review, The Journal of Economic Literature, and Research Policy. Stephan serves on the SUNY Research Council; she recently served on the National Academies Committee the Next Generation of Researchers Initiative and in the recent past has served on the National Research Council’s Board of Higher Education and Workforce and the Committee to Review the State of the Postdoctoral Experience for Scientists and Engineers. She served on the National Advisory General Medical Sciences Council, National Institutes of Health 2005-2009. Stephan received her undergraduate degree in economics from Grinnell College (Phi Beta Kappa) and her PhD from the University of Michigan.
PresentationLawrence Tabak, DDS, PhD
Principal Deputy Director, Initiative | National Institutes of Health Co-Chair, NIH Next Generation Researcher’s Initiative
Dr. Tabak is the Principal Deputy Director of the National Institutes of Health (NIH) and the Deputy Ethics Counselor of the Agency. He previously served as the Acting Principal Deputy Director of NIH (2009), and prior to that as Director of the National Institute of Dental and Craniofacial Research from 2000-10. Dr. Tabak has provided leadership for numerous trans-NIH activities, including the NIH Roadmap effort to support team science; the NIH Director's initiative to enhance peer review; NIH's American Recovery and Reinvestment Act implementation; the NIH initiative to enhance rigor and reproducibility in research; and the NIH-Wide Strategic Plan. He co-chaired working groups of the Advisory Committee to the Director of NIH on the Diversity of the Biomedical Research Workforce, the Long-Term Intramural Research Program, and, currently is co-chair of both the Next Generation Researcher’s Initiative and High Risk High Reward Research working groups. Prior to joining NIH, Dr. Tabak was the Senior Associate Dean for Research and Professor of Dentistry and Biochemistry & Biophysics in the School of Medicine and Dentistry at the University of Rochester in New York. A former NIH MERIT recipient, Dr. Tabak's major research focus has been on the structure, biosynthesis and function of glycoproteins. He continues work in this area, maintaining an active research laboratory within the NIH intramural program in addition to his administrative duties. He is an elected member the National Academy of Medicine of the National Academies.
Presentation6:30 – 8:30 PM
(2hrs)
Reception With Heavy Hors D’Oeuvres at the Atlanta Marriott Marquis
March 29, Friday
8:00 – 9:20 AM
(70 min)
BREAKFAST: BREAKOUTS & NETWORKING
• Grants Program Analysis Working Group • Health Services Research Working Group
9:30 – 10:45 AM
(75 min)
Open Mic: Exciting and Innovative Activities by HRA Members
During this session, we will get together to learn from the experiences of fellow HRA members. HRA members will present innovative and exciting activities of their organizations to tackle some of the toughest challenges we face as research funders. The attendees are encouraged to participate in the session and share the exciting and innovative ideas their organization has tried to address, an identified challenge area that would be beneficial for the group to learn about.
Moderator
Margaret Flowers, PhD
Director, Scientific Communications and Grants | Breast Cancer Research Foundation
Chris Martin, PhD
Senior Science Program Officer & Director, Science Operations | The Kavli Foundation
Presenters
Sherry Sours-Brothers, PhD
Research Outcomes Manager | American Heart Association
Sherry specializes in research impact evaluation for strategic program development and evidence-based decision making at the American Heart Association. Her goal at American Heart is to demonstrate the value and impact of its funded research programs aimed at improving cardiovascular health of all Americans. With a career that has spanned across academia, industry, and non-profit, Sherry views her work through her foundational lens as a renal physiologist. Previously, Sherry was a leader in strategic global clinical value proposition as Associate Director of Payer Evidence, working to advance patient access in rare disease indications for Alexion Pharmaceuticals.
Mary O’Reilly, PhD
Vice President, Bioscience Research Programs | Flinn Foundation
Mary oversees the Flinn Foundation’s basic and translational research programs and serves as the foundation’s lead official in interfacing with the scientific research community. She guides the Foundations interest in emerging grant opportunities in the biomedical research sector and measures the assess the impact of Arizona’s investments in the biosciences. Mary, a chemist and materials scientist by training has spent her career in industry and the non-profit research sectors, looking to find more efficient ways to translate research into better products and practices, now with a focus on patients and health care practitioners.
Nicole Willmarth, PhD
Chief Mission Officer | American Brain Tumor Association
Nicole Willmarth, PhD joined the American Brain Tumor Association (ABTA) in 2015 as Chief Science Officer with oversight of the strategic direction, expansion and operation of the ABTA’s scientific and research grants program, which supports the development of innovative ideas across a broad range of disciplines, and fosters collaborative research to improve the lives of people living with a brain tumor. In August 2018, Nicole stepped into her new role of Chief Mission Officer, where she leads a team in developing and executing ABTA’s investment toward the mission, which includes advancing brain tumor research as well as patient support and education. Prior to joining the ABTA, Nicole worked at Susan G. Komen® where she oversaw the business and science management of Komen’s portfolio of funded research program grants. Nicole began her career in scientific grant management with the American Association for Cancer Research (AACR) where she developed, launched and managed several mechanisms as part of AACR’s donor-directed research grant programs. Prior to joining AACR, Nicole received her Ph.D. in Cellular and Molecular Biology at the University of Michigan and conducted research in the oncology field for 8 years. Over the course of those studies, she published research in a number of peer reviewed scientific journals. She currently resides in Chicago, Illinois with her husband and two children.
Cecile Norris
Senior Research Manager, IBD Plexus | Crohn’s & Colitis Foundation
Presenters
Lynne Garner, PhD
President & Trustee | Donaghue Foundation
Michael Kaplan
President & CEO | Melanoma Research Alliance
Erik Lontok, PhD
Chief Science Officer | Lipedema Foundation
Salvo LaRosa, PhD
Chief Science Officer | Children's Tumor Foundation
Margaret Flowers, PhD
Director, Scientific Communications and Grants | Breast Cancer Research Foundation
Joe Cotter, MA
Research Constituent Engagement Manager | American Cancer Society
10:45 – 11:15 AM
(30 min)
Break
11:15 – 11:30 AM
(15 min)
HRA News and Updates
HRA Executive Director
Maryrose Franko, PhD
Dr. Maryrose Franko is Executive Director of the Health Research Alliance. Working closely with the organization’s board, she sets its strategic priorities, advances its members’ objectives through key programs, and develops tools for the nonprofit biomedical community.Dr. Franko’s background includes over 20 years of program management at the Howard Hughes Medical Institute (HHMI), including strategic planning as well as creating, implementing, and managing over a dozen programs and initiatives. These include graduate, medical student and postdoctoral research fellowships, and an innovative and groundbreaking joint initiative with the National Institute of Biomedical Imaging and Bioengineering at the National Institutes of Health. Dr. Franko also ran both the graduate and undergraduate programs at HHMI’s state-of-the-art research facility, Janelia Research Campus, and created professional development opportunities for Janelia’s postdocs. Dr. Franko’s collaboration with the Burroughs Wellcome fund to develop a residential Lab Leadership and Management course, led to the creation of Making the Right Moves: A Practical Guide to Scientific Management for Postdocs and New Faculty, and the companion guide, Training Scientists to Make the Right Moves, which were joint efforts of HHMI and Burroughs Wellcome Fund.Dr. Franko received her PhD in molecular genetics from University of Southern California and did a post-doctoral fellowship at the National Institutes of Health before joining HHMI. During her time at HHMI, Franko was a founding board member of HRA, serving from 1995 to 2012. While a member of HRA, she initiated and led the Early Career Scientist Working group which is now the Research Workforce and Early Career Development working group. She serves on many boards, including the Center for Open Science, and Northern Virginia’s new interactive science museum – the Children’s Science Center.
11:30 AM – 12:30 PM
(60 min)
Highlighting our Sponsors
Moderator
Maryrose Franko, PhD
Executive Director | Health Research Alliance
Dr. Maryrose Franko is Executive Director of the Health Research Alliance. Working closely with the organization’s board, she sets its strategic priorities, advances its members’ objectives through key programs, and develops tools for the nonprofit biomedical community.Dr. Franko’s background includes over 20 years of program management at the Howard Hughes Medical Institute (HHMI), including strategic planning as well as creating, implementing, and managing over a dozen programs and initiatives. These include graduate, medical student and postdoctoral research fellowships, and an innovative and groundbreaking joint initiative with the National Institute of Biomedical Imaging and Bioengineering at the National Institutes of Health. Dr. Franko also ran both the graduate and undergraduate programs at HHMI’s state-of-the-art research facility, Janelia Research Campus, and created professional development opportunities for Janelia’s postdocs. Dr. Franko’s collaboration with the Burroughs Wellcome fund to develop a residential Lab Leadership and Management course, led to the creation of Making the Right Moves: A Practical Guide to Scientific Management for Postdocs and New Faculty, and the companion guide, Training Scientists to Make the Right Moves, which were joint efforts of HHMI and Burroughs Wellcome Fund.Dr. Franko received her PhD in molecular genetics from University of Southern California and did a post-doctoral fellowship at the National Institutes of Health before joining HHMI. During her time at HHMI, Franko was a founding board member of HRA, serving from 1995 to 2012. While a member of HRA, she initiated and led the Early Career Scientist Working group which is now the Research Workforce and Early Career Development working group. She serves on many boards, including the Center for Open Science, and Northern Virginia’s new interactive science museum – the Children’s Science Center.
Presenters
J. Len Lichtenfeld, MD, MACP
Interim Chief Medical and Scientific Officer | American Cancer Society
Dr. Lichtenfeld has been appointed interim Chief Medical and Scientific Officer for the American Cancer Society effective November 3, 2018. In that role he has oversight responsibility for the Society’s epidemiologic, behavioral and statistical research activities, external grants, medical affairs, and relevant constituent relationships. A frequent spokesperson in the media on behalf of the American Cancer Society, Dr. Lichtenfeld has since 2005 written a widely read blog focused on topics related to cancer. He is board certified in medical oncology and internal medicine and practiced for over 19 years. He has also been engaged in health care policy and numerous medical professional organizations on a local, state, and national level for most of his professional career.
PresentationLou DeGennaro, PhD
President and Chief Executive Officer | Leukemia & Lymphoma Society
Louis J. DeGennaro, Ph.D., was named president and chief executive officer of The Leukemia & Lymphoma Society (LLS) in September 2014 and now leads the operations of this $300 million cancer patient advocacy agency with headquarters in White Plains, New York. A critical member of the LLS executive leadership team, he joined LLS in 2005 and was named chief mission officer in 2009, with responsibility for leadership of LLS’s mission functions of research, patient access, education, public policy and advocacy. Dr. DeGennaro is recognized as the key architect of LLS’s cures and access agenda to help save lives of blood cancer patients as well as the LLS Therapy Acceleration Program® - a venture philanthropy endeavor that defined the role of nonprofit organizations in supporting drug discovery and development with the biotechnology industry. Dr. DeGennaro has more than 25 years of research, drug development and executive management experience in academic and private sector settings. He received his Ph.D. in biochemistry from the University of California at San Francisco and did his post-doctoral research at the Yale University School of Medicine. His previous academic appointments include research group leader, Max Planck Institute in Munich, Germany and associate professor of neurology and cell biology, University of Massachusetts Medical School. Dr. DeGennaro's private-sector positions include senior director of molecular genetics at Wyeth Pharmaceuticals, Princeton, NJ, and executive vice president for research and development, SynX Pharma, Inc. in Toronto, Canada.
PresentationEryn Marchiolo, MPH
Senior Director, Research and Training | Rheumatology Research Foundation
Eryn Marchiolo joined the Rheumatology Research Foundation in 2013. She oversees the strategy and management of the Foundation’s mission related objectives, works closely with the Scientific Advisory Council and provides operational oversight to the organization’s grants portfolio. Eryn received her Master’s degree in Public Health from Georgia State University and a Bachelor’s degree in Exercise Science from Guilford College.
Presentation12:30 – 2:00 PM
(90 min)
LUNCH: BREAKOUTS & NETWORKING
• Drug and Other Therapy Development Working Group • Data Sharing Working Group
2:00 – 3:30 PM
(90 min)
Evolving Intellectual Property Policy: Overview and Implementation
The research supported by non-profit funders may result in new products, inventions, new technology and new concepts – called intellectual property (IP). These deliverables may provide an unforeseen and potentially significant return on investment for non-profits whose funds helped to support the research from which the IP was derived. Whether the institution pursues commercialization or not, funders should consider issues such as ownership of research, the options for commercialization, and revenue sharing agreements, etc. through an IP policy. In this session, members will hear from three speakers from the HRA membership on their experiences in the decision making, implementation and monitoring IP policies. Speakers will discuss what has worked well in their processes and share possible pitfalls your organization may be able to avoid, what you may expect in negotiations with institutions during the contract phase of grant execution, and different approaches for monitoring adherence to contractual obligations over time – including after grants are closed. Members will gain an understanding of the effort needed to create an IP policy, key points needed in such a policy, and have tools needed to take next steps, wherever they are in the process of adopting an IP policy. The session will include panel discussion for Q&A and opportunities to hear from others in the audience.
Moderator
Krissa Smith, PhD
Director, Research Programs | Susan G. Komen
Dr. Krissa Smith is the Director of Research Programs at Susan G. Komen. In this role, she is responsible for executing the strategic direction of Komen’s Scientific Advisory Board. Krissa oversees the direction and implementation of Komen’s research investment through competitive research grant applications and in oversight of funded breast cancer research grants from around the world. She leads a team of scientific and administrative staff to support Komen’s Bold Goal, to reduce the current number of breast cancer deaths by 50% in the U.S. by 2026 and ensure that the patient voice is a part of the research process every step of the way. Krissa is committed to identifying and communicating key funded projects and researchers within the Komen research grants portfolio to ensure transparency and accuracy for stakeholders and future donors. Prior to joining Komen in 2011, Dr. Smith completed a postdoctoral fellowship at the Sanford Burnham Prebys Medical Discovery Institute and received her Ph.D. from Georgetown University.
Presenters
Susanna Greer, PhD
Scientific Director, Clinical Cancer Research and Immunology | American Cancer Society
Susanna Greer, PhD is the Scientific Director for Clinical Cancer Research and Immunology at the American Cancer Society. In this capacity she supports external partnerships; manages scientific review and grant policy development and implementation; and collaborates with advocacy efforts to accomplish the mission of the ACS. Dr. Greer received a BS Degree in Chemistry from Berry College and a PhD in Immunology from the University of Alabama at Birmingham. In her post-doctoral work at the University of North Carolina at Chapel Hill, she studied the ways chromatin remodeling influences immune responsiveness. As an Associate Professor at Georgia State University, Dr. Greer launched Greer Consulting, Science Speak Easy, a consulting firm focused on facilitating communication between scientists and lay audiences based on identification of shared goals, benefit analysis, and non-technical delivery. At the ACS, these experiences inform her work with grant recipients to improve their scientific communication skills for public outreach.
PresentationMichael Kaplan, MA
President and CEO | Melanoma Research Alliance
Michael Kaplan has served as President & CEO of the Melanoma Research Alliance (MRA) since 2016. Building on more than 25 years of executive non-profit and public health leadership experience, Mr. Kaplan has a proven record as a passionate supporter of health research, policy and grant making. Mr. Kaplan has headed nonprofits and patient advocacy groups across the United States and internationally. He has managed international and domestic grant-making portfolios focused on disease surveillance, prevention, treatment and research. Prior to MRA, Mr. Kaplan served as the President and CEO of Washington, DC-based AIDS United. Additional leadership positions have included Executive Director of Cascade AIDS Project in Portland, Ore., Vice President for International HIV Programs at the Academy for Educational Development, and Deputy Director roles at both the Futures Group International and the National Youth Advocacy Coalition in Washington, DC. He has served on the boards of several organizations focusing on everything from health issues to grant-making, and behavior health to healthy youth development. Mr. Kaplan holds a B.A. in Child Psychology and an M.A. in Adult & Community Education from the University of Minnesota.
PresentationManeesh Kumar, MD, PhD
Optimized Scientific Solutions, LLC on behalf of Breast Cancer Research Foundation
Dr. Kumar started Optimized Scientific in September 2018. He uses his deep scientific knowledge, medical training, and experiences in non-profit, and communication skills to support and grow non-profit organizations. His primary focus is in developing new grant programs and ways of funding research, but also is an expert in scientific writing (in particular translating scientific writing for lay audiences), grants program analysis, and thinking outside the box.
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