Fall 2019 HRA Members’ Meeting (Alexandria)

September 25-26, 2019

Additional Event Info: Meeting Agenda | Breakout Descriptions | Directions & Parking | Participant List

Meeting Info

The fall 2019 members meeting was held at the Conquer Cancer offices in Alexandria (at 2318 Mill Road, Suite 800 Alexandria, VA 22314 .)  Please see the links above for the meeting agenda, breakout session descriptions, directions to the meeting space and the participant list (requires HRA login, please contact Annette if you need to have one created.)

Meeting Agenda, Speaker Bios and Presentations (click on each day to expand)

September 25, Wednesday

10:00 – 10:30 AM

(30 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

Chris Martin, PhD

Senior Science Program Officer & Director, Science Operations | The Kavli Foundation

Chris Martin’s interests span the continuum from physics to public policy and he has helped launch a number of national initiatives while at Kavli (the U.S. BRAIN Initiative, the International Brain Initiative, the National Microbiome Initiative, and the National Quantum Initiative). Prior to joining the Kavli Foundation in 2013, Dr. Martin was a Professor of Physics and Astronomy at Oberlin College (2004-2013) where he studied the Milky Way Galaxy using the Herschel Space Observatory, long-duration balloon missions, and telescopes around the world. During his tenure at Oberlin, he spent a year as an American Association for the Advancement of Science (AAAS) Congressional Fellow with the United States Senate Committee on Commerce, Science, and Transportation and was involved in the America COMPETES Reauthorization Act of 2010, space policy, nanotechnology, and the federal funding of science research. Dr. Martin completed his Ph.D. in Theoretical Physics at the University of California, Santa Barbara in 1999, and then became the Station Science Leader at the Amundsen-Scott South Pole Station and spent two years wintering over at the bottom of the Earth during his postdoctoral fellowship at the Harvard Smithsonian Center for Astrophysics.

Caren Heller, MD, MBA

Chief Scientific Officer | Crohn’s & Colitis Foundation

As Chief Scientific Officer at the Crohn’s & Colitis Foundation, Dr. Caren Heller is responsible for the Foundation’s research programs, venture philanthropy initiative, quality of care network, and education, support and advocacy activities. Her prior roles include Associate Dean for Intercampus and Industry Initiatives at Weill Cornell Medicine and President and founder of a consultancy, providing experienced commercial and medical insight for strategic market development, portfolio prioritization, and product development to pharmaceutical, biotechnology, and medical device companies. She served as a member on the NIH National Diabetes and Digestive and Kidney Diseases Advisory Council until recently. Dr. Heller earned her BA from Harvard University, MD from Columbia University, and MBA from The University of Chicago.

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.

Presenter

Clifford A. Hudis, MD, FACP, FASCO

Chief Executive Officer | ASCO and Conquer Cancer

Dr. Clifford Hudis is the Chief Executive Officer of the American Society of Clinical Oncology (ASCO) and Conquer Cancer, the ASCO Foundation, and Chairman of the Board of Governors of CancerLinQ, the only non-profit, physician-led big data analytics platform for cancer in the U.S.Previously he served for nearly two decades as the Chief of the Breast Medicine Service and Attending Physician at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City where he was also a Professor of Medicine at the Weill Medical College of Cornell University. In this role, he developed more effective treatments for all stages of breast cancer, while also exploring novel prevention opportunities. He was the President of ASCO during its 50th anniversary year in 2013-2014. He’s a former Associate Editor of the Journal of Clinical Oncology, was co-chair of the Breast Committee of the Alliance for Clinical Trials in Oncology (formerly Cancer and Leukemia Group), and former Chair of the Scientific Advisory Committee of the Breast Cancer Research Foundation. As CEO of ASCO, he has recently led the organization as it developed a comprehensive strategic plan and identified key priorities and opportunities for the next five years.

10:30 – 12:00 PM

(90 min)

Effective Approaches to Increase Diversity and Inclusion in the Biomedical Research Workforce

The research workforce does not reflect the diversity of the U.S. population and individuals from specific groups remain underrepresented in the biomedical research workforce. According to the National Science Foundation, 8% of U.S. residing doctoral scientists and engineers are African American or Black, American Indian, Alaska Natives, or Hispanic Latinos. The number of individuals from these groups would have to quadruple to reach parity with the demographics of the US population. Funders and research institutions alike have engaged in efforts to expand the talent pool by increasing diversity in the workforce. This session will present different approaches that funders have taken to address this issue, the limitations of their approaches, and address the question of what works and what doesn’t work. A diversity officer from a research-intense institution will offer advice on other ways in which funders can support effective diversity and inclusion efforts.

Moderator

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.

Presenters

Lisa Evans, JD

Scientific Workforce Diversity Officer | NIH

Ms. Lisa Evans is the Scientific Workforce Diversity Officer in the Office of the Director at the National Institutes of Health. She is responsible for proposing extramural policy and national program recommendations to enhance the diversity of the NIH funded biomedical research workforce. Ms. Evans also provides guidance on program design and works cooperatively with program staff in 27 institutes and centers, professional societies, and federal science agencies. Ms. Evans received her B.A. in Political Science and Black Studies from Amherst College, and a J.D. from Columbia University School of Law, where she was a Charles Evans Hughes Fellow and an NAACP LDEF Earl Warren Legal Scholar. She holds a Diversity and Inclusion Professionals Certificate from the Industrial and Labor Relations School at Cornell University.

Presentation

Kumea Shorter-Gooden, PhD

Principal/Owner | Shorter-Gooden Consulting

From 2012 to 2016, Dr. Kumea Shorter-Gooden served as the first Chief Diversity Officer and Associate Vice President at the University of Maryland, College Park. Formerly, she served as Associate Provost for International-Multicultural Initiatives at Alliant International University, as Professor at the California School of Professional Psychology, as Director of the student counseling center at The Claremont Colleges, and as an administrator in two Chicago community mental health centers. She is a Licensed Psychologist and the co-author of Shifting: The Double Lives of Black Women in America, a winner of the 2004 American Book Awards. A Fellow of the American Psychological Association, she is a thought leader with respect to equity, diversity and inclusion. A native of Washington, DC, Kumea was one of two Black girls to integrate The Madeira School in Northern Virginia. She earned a bachelor’s degree magna cum laude from Princeton University with its first class of women and a Ph.D. in Clinical/Community Psychology from the University of Maryland. Kumea is currently the Principal at Shorter-Gooden Consulting, based in Washington, DC (www.shorter-goodenconsulting.com).

Presentation

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.

Presentation

Patricia Frustace

Director of Awards and Diversity | American Society for Hematology

Patricia Frustace joined ASH in April of 2012. Broadly the Awards and Diversity department encompasses responsibility for a selection of the ASH career development awards and the ASH diversity and inclusion programs. Patricia is responsible for the management and oversight of the organization’s honorific awards, career development awards, and the diversity and inclusion programs. Under her tenure, these programs have expanded to represent a $13 million longitudinal pathway of support that seeks to recruit and retain talent within the field of hematology. Further, the Minority Recruitment Initiative now contains an unbroken pathway of programs seeking to support those from backgrounds underrepresented in medicine succeed in the field of hematology.Patricia has 20+ years of professional experience ranging from external auditing for non-profits to working as an internal consultant for a Fortune 500 media company to working as an internal consultant and operational lead for one of the most recognized non-profits in the world. Prior to joining ASH, she served in a variety of roles, including Executive Director for Development Advancement at the American Red Cross, National Headquarters. In this role she was responsible for transforming the organization’s fundraising strategy and structure, including leading edge prospecting and lead generation as well as training strategy and donor communications for 1,200 relationship managers across the country. She also served as the Director of Operations for a 5-year, $200M recovery program in response to Hurricane Katrina. Patricia has two bachelor’s degrees in Accounting and Decision Sciences from George Mason University in Fairfax, Virginia, and earned her Certified Public Accountant licensure in Virginia in 1995.

Presentation

12:00 – 1:15 PM

(75 min)

LUNCH

Breakout Sessions

Grants Administration

Led by Joan New and Katrina Bandong

The peer-review process is often viewed as a flawed and antiquated system yet is left unchallenged for change. The need for transparency and open-reviews are garnering attention, encouraging the biomedical research community to consider new approaches to peer-review. During this breakout session, The Grants Administration Working Group will be discussing an innovative model of peer-review presented by Dr. Jinfeng Zhang from Pevals. Pevals provides internet-based submission, peer evaluation by participants, and automated ranking. We hope the session will encourage HRA members to share their thoughts and experiences. More information on Pevals can be found at www.pevals.com.

Open Science Task Force

Led by Belinda Orland and Jason Gerson

The Open Science Task Force (OSTF) will provide an update on the open science “landscape” for those interested in gaining a high-level understanding of the current environment, including funders’ policies, publishers’ policies and requirements, academic institutions’ policies and open science resources, and more. The session will highlight active efforts to address the current set of incentives and disincentives in order to support open science. We will hear briefly from HRA members about groups that are active in this space, including the Open Research Funders Group (ORFG), the NAS Roundtable on Aligning Incentives for Open Science, the Multi-Regional Clinical Trials Center (MRCT Center), and the Center for Open Science (COS). Several of these organizations have great resources available for funders, which we will highlight in a one-page handout. The goal is to introduce participants to the current open science environment, then engage with each other to discuss challenges we encounter as funding organizations and brainstorm how HRA might help move the conversation forward.

Handout

1:15 – 2:15 PM

(60 min)

Translating the Microbiome: Past, Present, and Future

Research over the last decade has revealed the enormous diversity of the human microbiome and the myriad of ways that it impacts health and disease. Dr. Lita Proctor, PhD, the former Coordinator of the Human Microbiome Project (HMP), will present some of the findings of the HMP, and its second phase, the integrative HMP, as well as discuss how the scientific community is moving past inventorying and into establishing cause and effect. She will also discuss where microbiome research should head in the future – for instance, can microbiome research be translated to improve health and treat disease?

Moderator

Margaret Flowers, PhD

Director, Scientific Communications and Grants | Breast Cancer Research Foundation

Margaret Flowers is the Director of Scientific Communications and Grants for the Breast Cancer Research Foundation. Her primary focus is in communicating the science and impact of research funded through BCRF. She has worked in the breast cancer non-profit space for over 8 years. While part of the research team, she interfaces with multiple teams (Communications/ Digital/ Marketing, Development and Corporate Partnerships) to help communicate BCRF’s impact to a variety of stakeholders. She received her bachelors and doctorate degrees at the University of Arizona, choosing to leave a culinary career to pursue breast cancer research. After completing a postdoctoral fellowship in experimental therapeutics at John Wayne Cancer Institute (Santa Monica, CA), Margaret left the laboratory for breast cancer non-profit industry to be part of a mission she personally related to.

Presenter

Lita Proctor, PhD

Former Program Director | Human Microbiome Project, NIH/NHGRI

At the National Institutes of Health, Dr. Lita Proctor served as Coordinator of the Human Microbiome Project, a ten-year $215M community resource program to create a research toolbox of microbiome reference datasets, computational and analytical tools and clinical protocols for this emerging field of biomedical research. Prior to this, she served as Program Director for the National Science Foundation’s Geosciences and Biosciences Directorates, where she managed microbiological, bioinformatics and research resource programs and for the Marine Microbiology Initiative at the Gordon and Betty Moore Foundation. She is formally trained in microbial ecology with a Ph.D. in Oceanography from Stony Brook University and in molecular genetics through an NSF Marine Biotechnology postdoctoral fellowship at UCLA. She held appointments at Florida State University and at UC-Santa Cruz and has authored over 30 papers, reviews and book chapters. Dr. Proctor retired in 2018 and is an NIH Special Volunteer where she serves on a number of science advisory boards and carries out public outreach activities about the microbiome.

Presentation

2:15 – 3:15 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

Clifford A. Hudis, MD, FACP, FASCO

Chief Executive Officer | ASCO and Conquer Cancer

Dr. Clifford Hudis is the Chief Executive Officer of the American Society of Clinical Oncology (ASCO) and Conquer Cancer, the ASCO Foundation, and Chairman of the Board of Governors of CancerLinQ, the only non-profit, physician-led big data analytics platform for cancer in the U.S.Previously he served for nearly two decades as the Chief of the Breast Medicine Service and Attending Physician at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City where he was also a Professor of Medicine at the Weill Medical College of Cornell University. In this role, he developed more effective treatments for all stages of breast cancer, while also exploring novel prevention opportunities. He was the President of ASCO during its 50th anniversary year in 2013-2014. He’s a former Associate Editor of the Journal of Clinical Oncology, was co-chair of the Breast Committee of the Alliance for Clinical Trials in Oncology (formerly Cancer and Leukemia Group), and former Chair of the Scientific Advisory Committee of the Breast Cancer Research Foundation. As CEO of ASCO, he has recently led the organization as it developed a comprehensive strategic plan and identified key priorities and opportunities for the next five years.

Diane Bovenkamp, PhD

Vice President, Scientific Affairs| BrightFocus Foundation

Diane Bovenkamp, PhD, Vice President, Scientific Affairs, oversees all of BrightFocus Foundation’s 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.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.

Presentation

Marc Hurlbert, PhD

Chief Science Officer | Melanoma Research Alliance

Dr. Marc Hurlbert serves as Chief Science Officer for the Melanoma Research Alliance (MRA). MRA is the largest nonprofit funder of melanoma research. In this role, he is responsible for guiding MRA’s scientific strategy, overseeing the peer-reviewed grant-making program, and forging scientific collaborations. He has more than 18 years of nonprofit and grant-making experience focused on advancing medical research. Past work has included treatment and prevention strategies for juvenile diabetes, breast cancer, lymphoma and multiple myeloma. In addition, Marc led the expansion of public health programs to enable low-income, uninsured and minority patient populations diagnosed with cancer to access treatments and care across the US, and in developing countries around the world.

Presentation

3:15 – 3:35 PM

(20 min)

Break

3:35 – 4:30 PM

(55 min)

BREAKOUT & NETWORKING

FIRST Group | Networking |

4:30 – 5:45 PM

(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

Caren Heller, MD, MBA

Chief Scientific Officer | Crohn’s & Colitis Foundation

Chris Martin, PhD

Senior Science Program Officer & Director, Science Operations | The Kavli Foundation

6:30 – 8:30 PM

(2 hours)

Reception with Heavy Hors D’Oeuvres

Carlyle Club at 2050 Ballenger Avenue

September 26, Thursday

8:15 – 9:30 AM

(75 min)

BREAKFAST

Breakout Sessions

Expanding Your Impact Beyond the U.S. Borders: Acting Locally, Thinking Globally

Led by Krissa Smith and Diane Bovenkamp

Philanthropy is growing and gaining visibility around the world. Increasingly, donors are expanding their portfolios to include local and global giving as strategies to address issues that are important to them. However, making grants to institutions outside the United States is complex. There are various requirements that funders need to comply with when giving grants to non-U.S. organizations. During this session, HRA members will share how global grantmaking is helping them advance their missions and make a positive impact in the world, and the lessons learned along with way. The session will facilitate a robust discussion about the challenges in giving grants to international organizations. All HRA members are encouraged to attend, whether your organization engages in global grantmaking or you’re interested in the possibilities for giving grants globally.

Presentation

Breakout Sessions

Drug and Other Therapy Development (DOTD)

Led by Steve Roberds, Mary O'Reilly, and Steve Rose

How can we effectively learn from HRA Members (and others) and share what we learn?The Drug and Other Therapy Discovery Working Group will discuss how HRA Members can learn from experiences of our colleagues. We will discuss launching a “venture advisory council” for members to get advice from other experienced HRA members when considering a form of venture philanthropy investment. Also, we will brainstorm about creating or modifying infrastructure to help members share non-confidential “competitive” intelligence. For instance, how can Member ABC, who is interested in drugs against target XYZ, learn that Member DEF is working with lab Q or company R on a suitable compound? What is needed to enable members to systematically find out about such opportunities?

9:30 – 11:00 AM

(90 min)

Creating Networking and Partnering Opportunities

Strategic partnering is becoming an increasingly valuable approach for nonprofits to advance their missions. This session will present three different types of strategic partnerships: partnering with FDA to accelerate approval of new therapies for rare diseases; advocacy partnering to increase support for a mission-related NIH center; and pharmaceutical partnering related to a foundation-developed patient registry. Representatives from the partnering organizations will present why and how they partner to create win-win outcomes, and they will be joined by their partnering HRA members on a panel to address audience questions.

Moderator

Kristen Mueller, PhD

Scientific Program Director| Melanoma Research Alliance

Kristen Mueller, PhD, is the Scientific Program Director of the Melanoma Research Alliance. She received her B.A. in biology from Carleton College and her Ph.D. in immunology from the University of Minnesota. Kristen joined the Melanoma Research Alliance in 2017 with more than 15 years of experience in biomedical research and scientific publishing. She currently manages MRA’s research awards, including the solicitation, peer review, and oversight of approximately $9 to $13 million per year in funded programs. She is also responsible for coordinating MRA’s Annual Scientific Retreat. Prior to joining the Melanoma Research Alliance, Kristen was a Senior Editor at the journal Science. At Science, her primary responsibilities included orchestrating the peer review process for manuscripts covering subjects such as cancer immunology and immunotherapy, infectious disease and vaccines, and also attracting the best research in these fields to Science.

Presenters

Andrea Furia-Helms, MPH

Director, Patient Affairs Staff, Office of Clinical Policy and Programs, Office of the Commissioner | Food and Drug Administration (FDA)

Andrea Furia-Helms is the Director of the Patient Affairs Staff in the Office of Clinical Policy and Programs, Office of the Commissioner. She works with the FDA medical product centers and other offices to support the FDA’s ongoing patient engagement efforts and coordinates cross-cutting patient engagement activities to ensure patients, caregivers, and advocates have opportunities to share their perspectives in the FDA regulatory meetings. Ms. Furia-Helms spent the over ten years in the FDA’s Office of Health and Constituent Affairs where she directed the FDA Patient Representative Program and coordinated patient engagement activities.Prior to FDA, Ms. Furia-Helms was Director of the Back to Sleep (now Safe to Sleep) campaign, a public-private partnership to educate communities on Sudden Infant Death Syndrome (SIDS), at the National Institutes of Health. She developed SIDS outreach initiatives for African American, American Indian and Latino communities.Ms. Furia-Helms has a B.A. in psychology from Framingham State University, a B.S. degree in community health education from University of Maryland, and a Master of Public Health degree from The George Washington University.

Presentation

Debbie Drell

Director of Membership | National Organization for Rare Disorders (NORD)

Debbie is the Director of Membership for the National Organization for Rare Disorders (NORD). She oversees NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations, patients, and patient advocates through education, research, advocacy, and mentorship. Ms. Drell coordinates the participation of 290 patient organizations — including PHA — and more than 700 executive directors, founders, chief scientific officers, board members and staff.Ms. Drell has 18 years of leadership in nonprofit public health education, awareness and advocacy. Most recently, she spent 13 years as a Senior Director for the Pulmonary Hypertension Association, a NORD member organization. During that time, she helped to grow the organization’s network of support groups from 80 to nearly 300; to develop new services tailored for patients of all ages; and to convene the largest gathering of PH patients in history. Debbie was inspired to enter the field after her sister, Alex, was diagnosed with pulmonary hypertension. Debbie has spoken on a thousand colleges and universities on women’s health issues; delivered speeches on caregiving across the country, including at Johns Hopkins University events; and has moderated panels at the World Orphan Drug Congress European meeting. Debbie has represented the patient voice on several national platforms, including as a member of the Board of Trustees of the American Thoracic Society, a 112-year old medical society boasting global membership of 16,000 pulmonologists, critical care and sleep disorder researchers, clinicians and medical professionals. She has brought the rare disease patient voice to a panel on NPR’s Kojo Nnamdi Show, and was featured in a cover story for Community, the quarterly publication of Caring Voice Coalition, a nonprofit group that provides financial support to people with rare diseases.

Presentation

James Jorkasky

Executive Director | National Alliance for Eye and Vision Research (NAEVR)

Since 2003, James Jorkasky has served as the Executive Director of each the National Alliance for Eye and Vision Research (NAEVR), a 501c4 advocacy organization, and the Alliance for Eye and Vision Research (AEVR), a 501c3 educational foundation. The Alliances, which serve as the “Friends of the National Eye Institute (NEI)” and represent the breadth of the community of support for eye and vision research, engage in advocacy and education, respectively, for the value and cost-effectiveness of federally funded vision research. A research biochemist by training, he has 40 years of health care policy experience in Washington, DC.

Presentation

Steven Brunette, PhD

Senior Associate Director, Patient Affairs and Engagement | Boehringer-Ingelheim

Steven is currently Senior Associate Director, Patient Affairs and Engagement at Boehringer Ingelheim (BI) in Ridgefield, Connecticut. Steven joined the research organization at BI as a medicinal chemist in 2001, following a post-doctoral fellowship at the Scripps Research Institute in La Jolla, California. Over his 15-year tenure in research, Steven contributed to the discovery and delivery of numerous investigational drug candidates into the clinical development pipeline. In 2016, following a fulfilling career in research, Steven chose to pursue a new opportunity to work more directly with patients in a role within the Patient Advocacy Relations team at BI. In this capacity, he supports efforts across several therapeutic areas, with a primary focus of facilitating the inclusion of the patient voice into BI’s clinical programs and research endeavors.

Presentation

Neil Thakur, PhD

Executive Vice President, Mission Strategy | The ALS Association

Neil Thakur, Ph.D., is Executive Vice President for Mission Strategy at The ALS Association, leading their advocacy, care services, and research programs. Prior to joining the Association, Neil served in the National Institutes of Health, where he supported NIH governance and helped make NIH research more open and less burdensome. He managed the world’s largest policy to make biomedical research papers publicly accessible, co-chaired the White House taskforce that lead to the requirement that all federal science agencies adopt similar policies, and spent a year on detail to the US Senate. Neil has worked with health systems in many capacities, including serving as Assistant Director of Health Services Research and Development at the Department of Veterans Affairs (VA), and working in and researching behavioral health systems across the country.

Ben Shaberman

Senior Director, Scientific Outreach & Comm Engagement | Foundation Fighting Blindness

For more than 14 years, Ben has been reporting on retinal research for all of FFB’s electronic and print publications. In addition, he presents the latest scientific advancements at local and national events, and conducts various training activities for staff and constituents. Ben also enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them.Ben has written three books – Retina Boy (coming in fall 2019), Jerry’s Vegan Women and The Vegan Monologues – all published by Loyola University (Maryland). His freelance essays and commentaries have been carried by The Washington Post, Chicago Tribune, Baltimore Sun, National Public Radio, and a variety of other newspapers and magazines.Ben earned a master of arts in writing from Johns Hopkins University, a master of science in systems management from the University of Maryland, and a bachelor of science in computer information science from Cleveland State University.

Angela Dobes, MPH

Senior Director, IBD Plexus | Crohn’s & Colitis Foundation

Angela Dobes, MPH works for the Crohn’s & Colitis Foundation. She is the Senior Director of IBD Plexus - a first-of-its-kind research information exchange platform founded to accelerate progress towards precision medicine, support real world evidence and improve the care of patients living with inflammatory bowel disease. Angela has over 15 years of experience in the health care industry. In addition to her experience at the Foundation, Angela has previously worked for clinical technology and pharmaceutical organizations, where she has led implementation of various technology solutions focused on business optimization and accelerating the delivery of new therapies to patients safely. Angela has also conducted research in the fields of managed care and patient engagement. Angela holds an undergraduate degree in Chemical Engineering from Lehigh University and she earned her graduate degree in Public Health from the Icahn School of Medicine at Mount Sinai.

11:00 – 11:15 AM

(15 min)

Break

11:15 AM – 12:15 PM

(60 min)

The Role of the Funder in Providing Mentoring Experiences for Grantees

During this session, we will explore how funders can provide support for mentoring within their programs as a part of workforce development. We will review a summary of current mentoring practices by HRA members. This will be followed by a talk from Dr. Chris Pfund from the University of Wisconsin-Madison. Dr. Pfund will discuss the national landscape of mentoring in STEM and provide resources that funders can use to support grantees. This main session will be followed by a breakout session where Dr. Pfund will lead HRA member organizations through the development of an implementation plan where they identify resources that best fit with their program needs and structure.

Moderator

Kara Coleman, PhD

Project Director, Biomedical Programs | The 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.

Presentation

Presenter

Christine Pfund, PhD

Associate Scientist | Univ. Wisconsin-Madison Director | Center for the Improvement of Mentored Experiences in Research, Wisconsin Center for Education Research

Christine Pfund, Ph.D. is a scientist with the Wisconsin Center for Education Research and the Department of Medicine at the University of Wisconsin-Madison (UW). Dr. Pfund earned her Ph.D. in Cellular and Molecular Biology, followed by post-doctoral research in Plant Pathology, both at University of Wisconsin-Madison. For almost a decade, Dr. Pfund served as the Associate Director of the Delta Program in Research, Teaching, and Learning and the co-Director of the Wisconsin Program for Scientific Teaching helping to train future faculty to become better more effective teachers. Dr. Pfund is now conducting research with several programs across the UW campus including the Institute for Clinical and Translational Research and the Center for Women’s Health Research. Her work focuses on developing, implementing, documenting, and studying interventions to optimize research mentoring relationships across science, technology, engineering, mathematics, and medicine (STEMM). Dr. Pfund co-authored the original Entering Mentoring curriculum and co-authored several papers documenting the effectiveness of this approach. Currently, Dr. Pfund is co-leading multiple studies focused on the impact of training on both mentors and mentees and understanding specific factors in mentoring relationships that account for positive student outcomes. Dr. Pfund was one of the principal investigators of the National Research Mentoring Network (NRMN), directing both the NRMN Mentor Training and Administrative Cores. She is now the principal investigator of the NRMN Coordination Center. She is also director of the Center for the Improvement of Mentored Experience in Research at UW-Madison (CIMER). She is currently serving on a committee of the National Academies to explore the science of effective mentoring in STEMM.

Presentation

12:15 – 1:45 PM

(90 min)

LUNCH

Breakout Sessions

Research Workforce and Early Career Scientists

Led by Kristin Smith-Doody, Kara Coleman, and Alycia Halladay

This breakout will be a follow-up from the main session titled “The role of the funder in providing mentoring experiences for grantees”. In the main session, Dr. Christine Pfund of the University of Wisconsin-Madison, will provide a tailored overview on mentoring resources for grantees. We will discuss ways to provide mentoring experiences for grantees in our programs and also how to train the next generation of strong mentors in STEM. In this subsequent breakout, Dr. Pfund will lead an implementation workshop where HRA members will assess the current level of mentoring in their programs, review mentoring resources available, and tailor a plan specific for their HRA member organization. Dr. Pfund will lead each HRA member through picking resources that fit with their program goals, time constraints, budgetary limits, and unique grantee needs.

Presentation

Patient Registries: The Good, the Bad and the Opportunities

Led by Erik Lontok and Angela Dobes

A Natural History of HRA & Patient RegistriesInformed by member and non-member experiences, challenges, questions, and accomplishments, this session will present and discuss organizations’ patient registries efforts. Challenges abound in available technology platforms, recruitment, data types, standardization, access and sharing, and of course, cost. Yet survey respondents across the board indicate the value and benefits registries bring to the patient community. As a launching point for a potential HRA Patient Registry Working Group, feedback gathered during this session will help guide the effort’s goals, content curation, and future discussionsJoin us for a discussion of current practices and how we can learn from each other to best position your organization to have an impactful and sustainable patient registry.

Presentation

1:45 – 3:00 PM

(75 min)

Fact vs. Fiction

Public opinion shapes attitudes about science, research funding, and health policy. In a crowded media environment where objectivity and trust cannot be presumed, how can funders and scientists leverage media to improve public health? This panel features two experts working at the intersection of science and communication. Sarah Gollust, PhD, Associate Professor, Division of Health Policy and Management at the University of Minnesota, examines “processes through which health information gets translated into the media, shapes public attitudes and opinions, and influences the health policy process.” Laura Helmuth, PhD, is the Health, Science and Environment Editor at The Washington Post and has covered health and medical research for more than 20 years. She also has a doctorate degree in cognitive neuroscience.

Moderator

Joe Cotter

Research Constituent Engagement Manager | American Cancer Society

Presenters

Sarah Gollust, PhD

Associate Professor, School of Public Health| Univ. of Minnesota

Sarah E. Gollust, PhD, is an Associate Professor in the Division of Health Policy and Management at the University of Minnesota School of Public Health. She is also an Associate Director of the Robert Wood Johnson Foundation Interdisciplinary Research Leaders, a national program based at the University of Minnesota that supports community-engaged health equity research. Her research examines the influence of the media and public opinion in the health policy process, the dissemination of research into policymaking, and the politics of health policy. She has focused this research agenda on a range of timely topics in public health, including childhood obesity, cancer screening, and the Affordable Care Act. Her research has been funded by the National Institutes of Health, the Robert Wood Johnson Foundation, the Russell Sage Foundation, and the American Cancer Society. She received her PhD from the University of Michigan and completed a postdoctoral fellowship at the University of Pennsylvania.

Presentation

Laura Helmuth, PhD

Health, Science and Environment Editor | The Washington Post

Laura Helmuth is the Health and Science Editor for The Washington Post and the immediate past president of the National Association of Science Writers. She has been an editor for National Geographic, Slate, Smithsonian, and Science magazines, and a freelance writer or editor for the New York Times, Nautilus, National Wildlife, Stanford Medicine and other publications. She is a member of the National Academies of Sciences, Engineering and Medicine’s standing committee on science communication, and she serves on the advisory boards of SciLine, High Country News, Knowable Magazine, Society for Science and the Public, and Spectrum and is a council member of the Geological Society of Washington. She has a Ph.D. in cognitive neuroscience from the University of California at Berkeley and attended the U.C. Santa Cruz science writing program. Follow her on Twitter at @LauraHelmuth

Presentation

3:00 PM

Adjourn