Additional Event Info: Meeting Agenda
Meeting Agenda, Speaker Bios and Presentations (click on each day to expand)
September 17, Sunday
10:30 – 11:45AM
Program Evaluation: Leveraging Shared Award Data and Other Data Sources
How are funding organizations using their own grant data and other data sources to inform their program planning and evaluation projects? More than ever, we have access to huge amounts of data. In addition to the award data in our grants management systems, we have award data from other funders (HRA RePorter, UberResearch Dimensions); publication data from PubMed and private data sources; patents from USPTO (Patents); and Altmetrics. How do we find the answers to our questions in all of this data? How do we show value for the cost and effort required to assemble and analyze it? How do we use this data to inform program decisions, patient advocates, donors, or our Board? The presenters offer a wide range of experience across funding organization and will provide examples from successful projects. The objective of these case studies is to provide some ideas you can use today and to encourage discussion about the opportunities, and challenges facing funders in analyzing big data
Salvatore La Rosa, PhD
Vice President, Research & Development | Children’s Tumor Foundation
Salvatore La Rosa, PhD, is Vice President of Research and Development at the Children’s Tumor Foundation (CTF) and he is responsible for the implementation of the Foundation’s business strategy into research projects. He manages the foundation’s research activities, providing scientific and knowledgeable review of discovery, preclinical and early development programs in the field of Neurofibromatosis (NF). Dr. La Rosa is responsible for the development and management of novel partnerships and initiatives with academic research groups and biotech/pharma companies which could address unmet needs in the field. Besides the activities of compound scouting and grants management, he is involved in ad-hoc collaborative research programs, CRO selection and management, as well as preclinical testing consortia and the implementation of a data-sharing platform for NF in collaboration with Sage Bionetworks and other NF funders. Dr. La Rosa’s team acts as project manager for the Synodos program, a $9M in three years investment, totaling 5 highly integrated projects, more than 40 Principal Investigators at 20 different institutions. He has co-authored more than 20 peer-review research articles and served as Group Leader and Project Leader for Siena Biotech (Italy), Nikem Research (Italy) and Evotec (UK) leading projects in the area of neurodegeneration and oncology. He holds a Ph.D. in Medicinal Chemistry from the University of Strathclyde in Glasgow (Scotland, UK) and MSc in Organic Chemistry from the University of Messina (Italy).Presentation
Michael Siegel, PhD
Vice President of Research Programs | National Psoriasis Foundation
Mike received his PhD in Bioengineering from the University of Washington and did his postdoctoral training at Oregon Health and Science University. During almost ten years of biomedical research experience, his studies focused on aging and cancer and he developed non-invasive optical systems to study biological process in vivo. He joined the National Psoriasis Foundation in 2014 and currently oversees all research activities of the Foundation, including grants programs, scientific meetings, and patient-centered research activities.Presentation
Director, Business Development | Altum, Inc.
Jamie McKee is the Director of Business Development for Altum, Inc. For twenty years, Altum has been providing custom software development for the NIH and other government agencies as well as grants management products, like proposalCENTRAL, used by many HRA members. Jamie’s passion is technology enabled business transformation; and, his vision is an interconnected research space which accelerates the pace of solutions for health. As an advocate of collaboration, Jamie has guided consortiums of research institutions and research funders in the cooperative development of technology solutions. An active proponent of HRA, Jamie and his team have been providing technical leadership and support for the formation of the HRA ORCID consortium.Presentation
Managing Director | ÜberResearch
Ashlea Higgs is one of the founders of ÜberResearch, part of the Digital Science family with Altmetric, Figshare, Readcube, and Symplectic. The ÜberResearch team has worked for over 15 years producing solutions that apply analytical technology like NLP to science content including publications, grants, patents, clinical trials, and more. Clients range from the largest funding agencies and most prestigious scientific publishers to the smallest foundations and non-profits. Ashlea looks after Digital Science’s global government, funder, and corporate business. Ashlea studied finance and economics at the Wharton School, University of Pennsylvania. He lives with his family near Washington, D.C.
12:45 - 1:15PM
Welcome to the Members’ Meeting and Introductions
During this session, member organizations will hear expert facilitators of strategic planning provide in- depth perspective on the “how to” regarding framing the strategy and next steps for either organizational or programmatic planning. Following this overview, attendees will hear first-hand how these methods applied to a fellow HRA member organization and then have an opportunity to apply these components to create a mock strategic plan for a ghost program or organization during a facilitated workshop. After this session, attendees will understand the basic steps to creating a strategic plan and understand the pieces that are required to execute those steps for future implementation at their own organizations.
Margaret Flowers, PhD
Associate Director, Grants and Scientific Communications | Breast Cancer Research Foundation
Dr. Margaret Flowers joined the Breast Cancer Research Foundation in March 2014. Her role at BCRF has evolved from administrative oversight of the annual grants program to also leading all scientific communications internally and externally. She works closely the BCRF’s communications, corporate partnerships and development teams in communicating the impact of BCRF’s research program to donors, constituents and the public. She continues to oversee the annual awards program and works closely with Chief Mission Officer, Dr. Marc Hurlbert in planning, execution and management of special projects and strategic program planning. She received her bachelors and doctorate degrees at the University of Arizona. After completing a postdoctoral fellowship in experimental therapeutics at John Wayne Cancer Institute (Santa Monica, CA), Margaret left the laboratory to pursue a career in the breast cancer non-profit industry. Prior to BCRF, she was a scientific grants manager with Susan G. Komen for three years.
Melissa Stevens, MBA
Executive Director, Center for Strategic Philanthropy | Milken Institute
Melissa Stevens is the Executive Director of the Milken Institute Center for Strategic Philanthropy. The Center for Strategic Philanthropy works to maximize return on philanthropic investment by ensuring that innovation used to address one social issue is translated to another, best practices and metrics guide new and existing giving programs, and resources are invested to optimize outcomes. Previously, Stevens was the deputy executive director of FasterCures, a center of the Milken Institute that is driven by a singular goal – to save lives by speeding up and improving the medical research system. Prior to that, she worked in the health sciences practice of PricewaterhouseCoopers, advising commercial and federal clients across the healthcare continuum. Stevens received a bachelor’s degree in biochemistry and an M.B.A. from Pennsylvania State University.Presentation
Jackie Hausman, MPP, MPH
Program Officer for Health | Kenneth Rainin Foundation
Jackie is the Kenneth Rainin Foundation’s Program Officer for Health. She manages the Health Program portfolio, which supports novel, high risk research worldwide that are potentially transformative to preventing and predicting Inflammatory Bowel Disease (IBD). Jackie also leads the annual Innovations Symposium, a one-of-a-kind event that gathers leading researchers from a variety of scientific disciplines to foster innovative and creative thinking about IBD. Prior to joining the Foundation, Jackie worked at the UC Davis Center for Health and Technology, where she directed the Model eHealth Communities program, a statewide initiative to improve access to health care in rural and other underserved communities through the use of telehealth, and managed the pediatric telehealth program. Prior to that, Jackie served as the Children’s Health Program Officer at First 5 Yolo Children and Families Commission, where she directed the initiative on access to quality health care, launched early childhood mental health and oral health initiatives, and managed policy activities for the Commission. Jackie holds Master’s degrees in both Public Policy and Public Health from the University of California at Berkeley, and a Bachelor’s degree in Philosophy from the University of Wisconsin at Madison.
3:00 - 4:00PM
Interest Group Breakouts
Accelerating treatments to Patients – Crossing the “Valley of death”
Going from an idea to a drug that can be tested in human patients is a long and arduous path. The later stages of preclinical development, including toxicology testing, drug manufacturing, and formulation are critical to gain approval from the FDA to move in human testing, but it is often quite challenging to secure funding for these types of studies. This stage of drug development is often referred to as the “valley of death” as many promising drug programs are not able to secure the necessary financing or partnerships to move forward. In addition, building an adequate intellectual property portfolio and commercialization plan is also critical in bringing a treatment to patients. What can we as foundations do bridge the “valley of death” and accelerate more treatments into human clinical testing and ultimately to patients in need? Foundations can’t do this alone so this session will include a panel of speakers illustrating cross-sector collaborations and innovative resources.
Diane Bovenkamp, PhD
Vice President, Scientific Affairs | BrightFocus Foundation
Diane Bovenkamp, PhD, Vice President, Scientific Affairs, oversees all of BrightFocus’ research programs, serves as the scientific liaison for the organization in local, national, and international forums, and identifies and develops new research initiatives, partnerships, and funding policies consistent with the mission of BrightFocus. Prior to assuming her current position, Dr. Bovenkamp served as the Scientific Program Officer and Science Communications Specialist at BrightFocus, and as Director of Science Information and Programs at Foundation Fighting Blindness. Dr. Bovenkamp obtained her PhD in Biochemistry from Queen’s University in Kingston, Ontario, Canada, discovering and studying Eph receptors in angiogenesis and neural development in zebrafish and mice. She completed a Postdoctoral Fellowship in the Vascular Biology Program at Boston Children’s Hospital/Harvard Medical School, isolating and characterizing zebrafish neuropilins. Dr. Bovenkamp conducted further research at the Johns Hopkins University Bayview Proteomics Center in the Division of Cardiology at Johns Hopkins School of Medicine in Baltimore, Maryland, using proteomic techniques for biomarker detection in human serum.
Eric Schaeffer, PhD
Senior Director, Scientific Innovation, Neuroscience | Johnson and Johnson Innovation Center
Eric Schaeffer Ph.D, is Senior Director Neuroscience Innovation, Johnson & Johnson Innovation and has more than 20 years of experience in the pharmaceutical industry, and has delivered multiple drug candidates to the clinic in both large and small company environments. Eric has an extensive background in the biology and pharmacology of CNS disorders including Alzheimer’s disease, major depressive disorder, bipolar disorder and schizophrenia. In his current role at Johnson & Johnson, Eric is responsible for establishing and managing external partnerships with biopharma companies and academic groups in the areas of Mood Disorders and Alzheimer’s disease. Previous roles held by Eric include Senior Director of Neuroscience Discovery at Pfizer where he was responsible for leading the preclinical pharmacology group, Director of Neuropharmacology at CHDI where he initiated and managed biotech and academic partnerships focused on Huntington’s disease, and Director of Clinical Biomarkers at Bristol-Myers Squibb where he was responsible for development and execution of the translational strategies for early clinical programs in the areas of schizophrenia, depression and neuromuscular diseases. Eric received his PhD from the Albert Einstein College of Medicine, and did postdoctoral work at MIT and Rockefeller University prior to initiating a career in the pharmaceutical industry.Presentation
Joel Braunstein, MD, MBA
Co-Founder, President and CEO | C2N Diagnostics
Dr. Braunstein is a board-certified cardiologist and internist. He is a co-founder of C2N Diagnostics and has been its CEO since inception. Dr. Braunstein has co-founded and played an executive role in numerous other emerging life sciences companies. He is a Founder and Managing Director of LifeTech Research (LTR), an investment research and seed-stage venture firm, since 2004. Beside C2N and LTR, he currently serves as a corporate director at Tivorsan Pharmaceuticals, Correx, NexGen Medical Systems, and 3PrimeDx. Dr. Braunstein received his M.D. with highest distinction from Northwestern University Medical School in 1996. Subsequently, he trained in internal medicine at the Brigham and Women’s Hospital, Harvard Medical School until 1999, and as a Fellow in Cardiovascular Medicine and Robert Wood Johnson National Clinical Scholar at the Johns Hopkins Medical Institutions. Additionally, he completed an M.B.A. with management focus in 2004 and maintained an Assistant Professor cardiology faculty position at Johns Hopkins University. He remains an advisor to the Johns Hopkins Carey School of Business and serves on the Commercial Advisory Board for University of Maryland Ventures. In 2010, he was named a Distinguished Alumnus of Johns Hopkins University.Presentation
Andrew Koemeter-Cox, PhD
Scientific Program Officer | Alzheimer’s Drug Discovery Foundation
Andrew Koemeter-Cox, PhD, works on the ADDF’s scientific initiatives, including the ACCESS program. In this capacity, he assists with reviews of funding proposals and manages the ACCESS website, which connects researchers with CROs and other drug discovery expertise. Dr. Koemeter-Cox was most recently a postdoctoral fellow at the Icahn School of Medicine at Mount Sinai, where he studied the epigenetics of axon regeneration in the context of spinal cord injury. From 2007 until 2009, he was a research technician with the United States Army Medical Research Institute of Chemical Defense (USAMRICD), assisting with studies on neuroprotection strategies. Dr. Koemeter-Cox earned a doctorate in biomedical science from The Ohio State University College of Medicine and a bachelor’s degree in biochemistry from the University of Delaware. He is a member of the New York Academy of Sciences, where he serves as a mentor for several programs.Presentation
Melissa J. Nirenberg, MD, PhD, FAAN
Chief Medical Officer | The New York Stem Cell Foundation
Melissa J. Nirenberg, MD, PhD is the Chief Medical Officer (CMO) of The New York Stem Cell Foundation (NYSCF). She joined NYSCF as its inaugural CMO in August 2017. Dr. Nirenberg pursued her undergraduate education at Yale University, graduating magna cum laude with Distinction in English. She received her MD and a PhD in Neuroscience from the Tri-Insitutional MD-PhD program at Weill Cornell, where her doctoral research included investigation of the neuroanatomy of the dopamine-containing neurons that are affected in Parkinson’s disease and related disorders. She subsequently completed residency training in Neurology at the University of California, San Francisco, followed by a fellowship in Movement Disorders at Columbia University. In 2005, Dr. Nirenberg joined the faculty of Weill Cornell Medicine as an Assistant Professor of Neurology and Associate Director of the Division of Movement Disorders. While she was at Weill Cornell, she was also appointed Associate Director of the Tri-Institutional MD-PhD program. In 2012, Dr. Nirenberg joined NYU Langone Health as an Associate Professor of Neurology in the Division of Movement Disorders, where she was also Associate Director of the NYU Neurology Residency program. In addition to her position at NYSCF, she is currently an Adjunct Professor of Neurology at NYU.Presentation
Robert Sege, MD, PhD
Chief Medical Officer & Director | The Medical Foundation at Health Resources in Action
Robert Sege, MD, PhD is the Chief Medical Officer at Health Resources in Action, and directs The Medical Foundation there. He is also a Senior Fellow at the Center for the Study of Social Policy and co-director of Community and Stakeholder Engagement for the Tufts University Clinical and Translational Science Institute. Dr. Sege is nationally known for his research on effective health systems approaches to the prevention of violence and abuse. He is a member of the boards of the Massachusetts Children’s Trust and Prevent Child Abuse America, and has served on the American Academy of Pediatrics’ Committee on Child Abuse and Neglect. He is a graduate of Yale College, and received his PhD in Biology from MIT and his MD from Harvard Medical School. Bob lives in the Boston area, where he and his wife Karen have raised three young adult children.Presentation
6:00 - 8:00PM
Group Reception at Smith & Wollensky Grille Chicago
September 18, Monday
8:00AM – 9:30AM
Small Group Discussions over breakfast
9:30 - 9:45AM
Presentation of initial analysis of Member Survey
9:45 - 10:45AM
Alzheimer’s disease biomarkers to accelerate clinical development and to improve clinical practice
Maria Carrillo, PhD
Chief Science Officer for Medical and Scientific Relations | Alzheimer’s Association
Maria Carrillo, Ph.D., is Chief Science Officer, Medical and Scientific Relations, at the Alzheimer’s Association. Dr. Carrillo has a wide range of responsibilities, including oversight of the Association’s grant making process and communication of scientific findings within and outside of the organization. Dr. Carrillo directly manages several Alzheimer’s Association initiatives, including the Research Roundtable, the World-Wide Alzheimer’s Disease Neuroimaging Initiative, and the Global Alzheimer’s Association Interactive Network. She is co-author of the National Institute on Aging–Alzheimer’s Association revised criteria for the diagnosis of Alzheimer’s, and the Appropriate Use Criteria for Amyloid Imaging. She is on the Advisory Committee for the World Health Organization Dementia Setting Priorities & Portfolio Analysis.
Gil Rabinovici, MD
Associate Professor of Neurology | UCSF Memory and Aging Center
Dr. Gil Rabinovici is a neurologist at the UCSF Memory and Aging Center who evaluates patients and manages their care. His research focuses on brain imaging techniques that can help with the diagnosis and management of dementia. Rabinovici received a fellowship award from the John Douglas French Alzheimer’s Foundation, the Kathryn Grupe Award from the Alzheimer’s Association of Northern California and Northern Nevada and the Henry Newman Award from the San Francisco Neurological Society. He earned a medical degree at Northwestern University Medical School and completed an internship in internal medicine at Stanford University. He served as co-chief resident while completing a neurology residency at UCSF. Rabinovici is an assistant clinical professor of neurology at UCSF.Presentation
James Hendrix, PhD
Director, Global Science Initiatives | Alzheimer’s Association
James A. Hendrix, Ph.D., is director, global science initiatives, at the Alzheimer’s Association. As a member of the Medical and Scientific Relations Division, he provides leadership on specific domestic and international efforts focused on advancing the division’s science agenda. A critical element of his role is to manage industry consortia such as the Alzheimer’s Association Research Roundtable (AARR); lead the Global Biomarker Standardization Consortium; manage and direct future meeting efforts and output; and assist with the coordination of the $100 million dollar Imaging Dementia-Evidence for Amyloid Scanning (IDEAS) Study on the clinical usefulness of amyloid PET imaging. Dr. Hendrix received his Ph.D. and a postdoctoral fellowship from Colorado State University. Before joining the Alzheimer’s Association, Dr. Hendrix was a pharmaceutical scientist with a focus on drug discovery for CNS diseases. Dr. Hendrix spent 18 years working at Sanofi-Aventis and predecessor companies, where he rose to level of senior director, U.S. site head for CNS research. He also spent two years working in the biotech industry with various companies, including Oligomerix, which is focused on tau for the treatment of Alzheimer’s disease.Presentation
Speak Visually: How to Use Visual Communication to Tell Your Research Story
Did you know that the average person only reads 20% of the content put in front of them if that content has more than 600 words? As research funders, this creates a huge hurdle to overcome. Now more than ever today’s audiences communicate in short, bite-sized conversations with visual media as their primary language. These visual conversations are happening all around us, and organizations are rushing to catch up so that they can speak visually in return. But in the rush to connect and share results, organizations often miss the mark leading to misunderstandings or worse: a lack of faith in the end product as a result of low-quality execution. So how can you communicate your research story in a way that connects with your target audience versus turning them off? Killer Infographics is an industry leading visual communications agency with a goal of helping clients speak visually through targeted campaigns that transform how organizations of all sizes connect with their audiences. For years, the team at Killer has helped notable institutions like Seattle Children’s Hospital, Seattle Cancer Care Alliance, and the Cleveland Clinic share their research stories and engage donors. Using industry examples, CEO Amy Balliett will show you how to develop successful visual content with tips and tricks that are budget friendly, targeted, and goal-oriented. In this session, you will learn: * How to identify where your research program communications falls short of visual authenticity and meaningful messaging and how to shift gears to succeed. * The process of designing an infographic from beginning to end * How to identify quality visual content that will convert so that you can avoid designing media that won’t. * How to develop dozens of pieces of custom and high-quality visual media without breaking the bank.
Jenna Koschnitzky, PhD
Director of Research Programs | Hydrocephalus Association
Jenna Koschnitzky, PhD is the Director of Research Programs at the Hydrocephalus Association (HA). The mission of the HA is to promote a cure for hydrocephalus and improve the lives of those affected by the condition. We strive to accomplish this mission by collaborating with patients, caregivers, researchers and industry, raising awareness, and funding innovative, high impact research to prevent, treat, and ultimately cure hydrocephalus. Jenna supports the work of two clinical networks, runs the HA Network for Discovery Science, and is responsible for all grant and research related activities of the Association. Dr. Koschnitzky joined HA in July 2014 after completing a Postdoctoral Fellowship at Seattle Children’s Hospital Research Institute where she studied maternal health and preterm birth. She holds a Bachelor of Arts in Psychology and minor in Neuroscience from Wake Forest University where she graduated Summa Cum Laude and was elected to the Phi Beta Kappa Academic Honor Society. In 2011, she received her Doctorate of Philosophy with a concentration in Neuroscience from Northwestern University. Jenna’s dissertation was focused on the electrical properties of motoneurons in a mouse model of Amyotrophic Lateral Sclerosis. Prior to joining FFB, Dr. Laster was a faculty member of the Department of Biology at Stevenson University. Dr. Laster completed a Postdoctoral fellowship at Johns Hopkins School of Medicine in the Solomon Synder Department of Neuroscience. Her area of research focus was the study of neurodegenerative diseases. Dr. Laster holds a B.S. Natural Science from Spelman College and a Ph.D. Biological Sciences from Purdue University.
Co-founder & CEO | Killer Infographics
Amy Balliett is the CEO and owner of Killer Infographics, an industry-leading visual communication agency driving visual strategy and campaigns for Fortune1000 clients. She owned her first company, an ice cream parlor and penny candy store, at the age of 17 before building a successful career in online marketing. In 2009, she partnered to launch Zippycart.com, which was subsequently sold as her focus shifted to Killer Infographics. Considered a thought leader in visual communication, Balliett is a regular instructor at the School of Visual Concepts, guest lecturer at the University of Washington, and a public speaker presenting at dozens of conferences each year.Presentation
12:45 – 1:45PM
Open Science – Pre-registration: Approaches to ensuring reproducibility and transparency
Reproducibility and transparency are critical elements to advancing biomedical research while providing scientists a tool for the future to better understand their data and outcomes. In this session, speakers will discuss the use of pre-registration and the strengths and challenges for funders to incorporate pre-registration as part of evaluation metrics. Perspectives for both non-clinical and clinical data will be presented to provide funders a comprehensive overview to determine how pre-registration may be a useful resource to ensuring that funded research projects are reproducible while encouraging our open science initiatives.
Katrina Bandong, MS
Program Associate for Medical Research | Doris Duke Charitable Foundation
Katrina Bandong is the program associate for medical research at the Doris Duke Charitable Foundation. Prior to joining the foundation in 2016, Bandong worked as a research coordinator at Weill Cornell Medical College (WCMC), where she began as a research aide for the Department of Genetic Medicine assisting in the development and execution of research targeting pulmonary diseases and various genetic mutations. Bandong then graduated to the role of in-house clinical monitor and research coordinator for NIH-funded, FDA-regulated clinical trials to ensure compliance with both federal and university regulations. As part of her training, she received certification from both the Association of Clinical Research Professionals and the Society of Clinical Research Association, Inc. In 2013, Bandong moved to the Division of Nephrology & Hypertension of WCMC where she acted as the division’s principal research coordinator. She worked closely with both the chief and faculty to facilitate NIH-funded projects focused on gene profiling in the prognostication of allograft rejection and dysfunction in transplant patients. Bandong earned a Bachelor’s of Arts degree in Spanish for International Services from the Catholic University of America and obtained her Master of Science degree in Fundraising and Grantmaking from New York University.
Tim Errington, PhD
Metascience Manager | The Center for Open Science
Dr. Errington is lead of metascience activities at the Center for Open Science (COS; https://cos.io) that aims to increase openness, integrity, and reproducibility of scientific research. In that position he collaborates with researchers and stakeholders across scientific disciplines and organizations to design, implement, and analyze projects aimed to understand the current research process and evaluate initiatives designed to increase reproducibility and openness of scientific research. He is currently spearheading the Reproducibility Project: Cancer Biology (https://osf.io/e81xl/wiki/home/), which is a collaboration between COS and Science Exchange, with eLife as the publisher, to independently replicate selected results from a substantial number of high-profile papers in the field of cancer biology. The project will provide evidence about reproducibility in cancer biology research, and to identify factors that influence reproducibility more generally. Tim received his PhD in Microbiology, Immunology, and Cancer Biology from the University of Virginia, MA in Molecular and Cell Biology at UC Berkeley, and earned a BS in Biology and Chemistry at St. Lawrence University.Presentation
Deborah Zarin, MD
Deborah A. Zarin, M.D. has been the Director of ClinicalTrials.gov since 2005. Dr. Zarin has played a major role in the development and implementation of the key legal and policy mandates for clinical trial reporting. As part of that process, Dr. Zarin provided the scientific leadership for the creation of the first structured public database for the reporting of summary trial results. Dr Zarin’s recent research has been on the quality of trial reporting, as well as issues in the design and analysis of clinical trials. Dr. Zarin’s academic interests are in the area of evidence based clinical and policy decision making, as well as clinical trial conduct, analysis and reporting. She is the author of over 80 peer reviewed articles. Dr. Zarin graduated from Stanford University and received her doctorate in medicine from Harvard Medical School. She completed a clinical decision making fellowship, a pediatric internship, and is board certified in general psychiatry, as well as in child and adolescent psychiatry.Presentation
1:45 - 2:45PM
Breakouts Sessions Over Lunch
3:00 - 4:15PM
Intersection of Policy and Science: Advocating for Funding to Advance Research
This session will provide examples of research advocacy between foundations, scientists, and policy makers. Ellie Dehoney, Vice President of Policy and Advocacy of Research!America will speak regarding her experience working with a range of different organizations. This session will also contain an HRA member panel in an effort to showcase different advocacy methods and levels of interaction with the political world. Speakers will cover experiences such as planning a Hill Day, advocacy via directly interacting with policy makers, and more indirect types of advocacy for organizations who need to remain politically neutral. Speakers will share the “how-to” of their advocacy program, including why a particular approach was chosen, challenges, outcomes and best practices.
Kara Coleman, PhD
Project Director, Biomedical Programs | Pew Charitable Trusts
Kara Coleman, Ph.D., manages Pew’s biomedical grant 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. The Pew scholars programs provides “no-strings attached” funding for assistant professors in the first three years of their assistant professor position. Proposals chosen for funding are high-risk, creative, and can fall anywhere in the spectrum of biomedical research. The Pew Latin American program was developed to fight the “brain-drain” of talented scientists from Latin America. It provides funding for Latin American researchers to complete postdoctoral studies in the United States and provides additional start-up funding for the scientists to return to Latin America and start their own lab. Coleman completed her doctorate in cell and molecular biology with Roger Greenberg, M.D., Ph.D., at the University of Pennsylvania School of Medicine, where she studied the role of the BRCA1 breast cancer susceptibility gene in DNA repair. Before joining Pew, Coleman developed an expertise in science writing and oversaw the development of medical content as scientific director at ETHOS Health Communications.
Ellie Dehoney, MPH
Vice President, Policy and Advocacy | Research!America
Eleanor (Ellie) Dehoney has been vice president of policy and advocacy at Research!America since March of 2011. Prior to joining Research!America, Ellie served as legislative director in the office of Sen. Sherrod Brown (D-OH). Ellie also served as the legislative director for Brown in the House of Representatives, where she maintained lead responsibility for work related to his role as Ranking Member of the Energy and Commerce Committee’s Health Subcommittee. Before joining Brown’s staff, Ellie served as a legislative assistant for former Senate Minority Leader Tom Daschle (D-SD). Previous positions included serving as a special assistant in the Office of the Assistant Secretary for Planning and Evaluation (ASPE) within the Department of Health and Human Services and in other executive branch and private sector roles focused on health care financing and delivery. Ellie currently serves on the Board of the EB Research Partnership, a private foundation dedicated to curing the lethal childhood disease Epidermolysis Bullosa. She received a BA in Economics and English from the College of William & Mary and an MSPH in Public Health from the University of North Carolina at Chapel Hill.Presentation
Laurie Whitsel, PhD
Director of Policy Research | American Heart Association
Dr. Laurie Whitsel is currently the Director of Policy Research for the American Heart Association (AHA), helping to translate science into policy at a national level in the areas of cardiovascular disease and stroke prevention and health promotion. The association’s policy research department provides policy development and the foundation for the American Heart Association’s advocacy work at the national, state, and local levels. Guided by volunteer leadership, the AHA policy research team has worked with leading experts around the world to develop policy statements that position the organization on issues that will impact cardiovascular health and reduce mortality, guide the association’s advocacy work at all levels of government, and inform policy makers, practitioners, health care professionals, researchers, the media, and the public. These statements have been cited thousands of times in high impact journals, received billions of impressions in US and global media outlets, shared on social media, and read throughout the world. Whitsel presents at national conferences on prevention issues and evidence-based policy making. She has been quoted in national media outlets. Whitsel serves on the Board of Directors for the Health Enhancement Research Organization and the National Coalition for Promoting Physical Activity. She has led the development of AHA’s strategic policy agenda. She has served on expert advisory groups to national initiatives, and has been a sector co-leader for the National Physical Activity Plan. She leads the AHA’s internal strategic plan around physical activity. She serves as an expert peer reviewer for several scientific journals and is a consultant on research grant teams. She has a courtesy appointment as an Associate Professor at the University of Illinois-Chicago and gives regular guest lectures at Columbia University. Her Ph.D. is from Syracuse University in nutrition science and she is a Fellow and member of the AHA’s National Scientific Council on Lifestyle and Cardiometabolic Health.Presentation
Jon Retzlaff, MBA, MPA
Chief Policy Officer, Vice President, Science Policy and Government Affairs | American Association for Cancer Research
As Chief Policy Officer, and Vice President, Office of Science Policy and Government Affairs, Mr. Retzlaff directs and oversees the science policy and government affairs activities for the American Association for Cancer Research (AACR) in Washington, D.C. In this role, Mr. Retzlaff (and his staff of ten people) works with the AACR Science Policy and Government Affairs Committee to devise and implement strategies to influence important biomedical research-related public policy issues that have the end goal of benefitting cancer patients. The office also works to foster more efficient and effective communication among legislators, regulators, scientists, and the public. Before joining the AACR in 2010, Mr. Retzlaff led the health and biomedical practice for a government relations firm in D.C. Prior to that, he served as legislative director for the Federation of American Societies for Experimental Biology from 2004-2007. Additionally, he previously worked (from 1993-2004) for the National Institutes of Health (NIH), first as a program analyst within the NIH Office of the Director’s legislative office; then as a senior legislative advisor to the National Institute of Neurological Disorders and Stroke; and finally as the Executive Officer of the National Library of Medicine. During his time as an NIH employee, Mr. Retzlaff was “detailed” to the House (1998) and Senate (2000-2001) appropriations subcommittees on labor, health and human services, education and related agencies on health research funding issues, as well as within the Office of the Secretary for Legislation at the Department of Health and Human Services. He entered the Federal Government as a Presidential Management Intern in 1993 and completed a rotation in the Office of Senator Herb Kohl (D-Wis.) during his two-years of formal training. Mr. Retzlaff earned a Bachelor of Science degree from the University of Minnesota in 1989, a master’s degree in public administration from Indiana University in 1993, and a master’s degree in business administration from the Massachusetts Institute of Technology in 2002.Presentation
Matthew Ellsworth, MFA
Vice President, Communications | The Flinn Foundation
Matt Ellsworth is Vice President of Communications at the Flinn Foundation. He leads the Flinn Foundation’s communications activities, including strategic planning, publications, electronic communications, media relations, special events, and internal and grantee communications. He joined the Foundation’s communications staff in 2007 after several years in the education and social-services sectors, and from 2012-2015, he directed the Flinn Scholars Program. Raised in Arizona, he holds a master of fine arts degree in fiction writing from George Mason University.Presentation
4:15 – 4:45PM