Spring 2020 HRA Members Meeting (Virtual)

March 30-31, 2020

Additional Event Info: Virtual Meeting Agenda

Meeting Info

The Spring HRA Members Meeting will be converted to a completely virtual meeting due to the Covid-19 outbreak.

Each of the four main sessions will require separate registration, for session details please see the updated agenda above.

Monday, March 30, 2020
Using Platform-Based Tools to Measure Impact followed by a virtual breakout session 
12:00 - 2:00pm ET        
Register here

Venture Philanthropy: Untapped Potential or Unintended Consequences? 
2:30 - 4:00pm ET  
Register here
Tuesday, March 31, 2020
RFA Development and Marketing & Open Mic
12:00 - 2:00pm ET
Register here
Patient Engagement
2:30 - 4:30pm ET       
Register here

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

March 30, Monday

12:00-2:00 PM ET

Using Platform-Based Tools to Measure Impact followed by Breakout session

As grantmakers, we often grapple with how to specifically demonstrate the impact of our research investment. Effectively explaining the return-on-investment from funding research is critical to our mission, as donors become increasingly interested in realizing the importance of their donations. This session will explore how platform-based tools can be used to visualize the impact of research funding. Guiding the session will be speakers who have successfully used such tools to tell their impact stories. Speakers will share the results of their work, while also discussing how they achieved the creation of deliverables to share with donors, their Boards, and/or the public. Likewise, they will also share their experiences and challenges that accompany the execution of such projects.

Moderator

Shannon Gallagher-Colombo, PhD

Associate Director, Corporate Alliances | American Association for Cancer Research

Shannon Gallagher-Colombo, PhD, is an Associate Director, Corporate Alliances, with the AACR Foundation. In this role, she is responsible for business development and relationship management for a portfolio of pharmaceutical companies and non-profit organizations who partner with the AACR. Her responsibilities largely involve working closely with these partners to fundraise for grants, conferences, and other initiatives to promote and drive the AACR’s mission. She also provides scientific expertise on various projects within the organization, as needed. Prior to joining the AACR Foundation, she served as Assistant Director of Scientific Review and Grants Administration at the AACR where she oversaw a multi-million dollar portfolio of industry- and foundation-sponsored research grants for scientists at all career stages.

Presenters

Jocelyn LeBlanc, PhD

Research, Data and Impact Manager | Association of Medical Research Charities

Jocelyn is the Research, Data and Impact Manager at the Association of Medical Research Charities (AMRC), a national membership organisation for over 145 health and medical research charities in the UK. She has a background in medical research. After earning her PhD in neuroscience from Harvard Medical School, she spent several years as a research fellow at Boston Children's Hospital studying brain development. Her work with children and families affected by neurodevelopmental disorders inspired her to pursue a career in the medical research nonprofit sector. She moved to London in 2015 and joined AMRC in 2017. At AMRC, she oversees the collection, analysis and publication of sector data to demonstrate the scale of nonprofit investment in medical research and highlight the impact of this research on people and society. She coordinates several working groups to support and connect AMRC members on issues related to research management and impact. She also leads on the Researchfish and AMRC Open Research projects.

Presentation

Kristen Mueller, PhD

Senior Director, Scientific Program | Melanoma Research Alliance

Kristen Mueller, PhD, is the Senior Director, Scientific Program of the Melanoma Research Alliance. An immunologist by training, Kristen joined the Melanoma Research Alliance in 2017 with more than 15 years of experience in biomedical research and scientific publishing. She currently oversees MRA’s research grants program, including the solicitation, peer review, and oversight of approximately $10 to $13 million per year in funded programs. She is also responsible for coordinating MRA’s Annual Scientific Retreat.Kristen currently co-chairs the Program Committee and is a member of the Board of Directors of the Health Research Alliance (HRA), a collaborative member organization of nonprofit research funders that is committed to maximizing the impact of biomedical research to improve human health.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.Kristen received her BA in biology from Carleton College and her PhD in immunology from the University of Minnesota. She completed a postdoctoral fellowship in immunology at the National Human Genome Research Institute of the National Institutes of Health.

Presentation

2:30 – 4:00 PM ET

Venture Philanthropy: Untapped Potential or Unintended Consequences? Exploring Venture Capital Approaches in the Philanthropic Space

Venture philanthropy does not come without its fair share of controversy. It remains a challenge for nonprofits, philanthropists, patients, start-ups and the general public to determine how – and if – we should combine philanthropy and for-profit strategies, even if the goal is to advance an organization’s mission as quickly as possible. Though venture philanthropy may have the potential to affect the pace of delivery of new treatments and translational research, there remain many considerations and challenges to choosing and implementing the most effective venture philanthropy model, including requirements for tracking grants and negotiating return of capital while staying true to the organization’s charitable purpose. This session will feature an overview presentation on how to navigate the options available within the venture philanthropy space, and then will have a moderated discussion and debate among several organizations that have applied these tools in unique ways within their grant-making portfolio. We will hear about their decision processes that led to the development of their approaches, how their venture philanthropy is structured, and successes and challenges with their approaches.

Moderator

Anne Hultgren, PhD

Executive Director | Arnold and Mabel Beckman Foundation

Presenters

Lisa Richter, MBA

Co-Founder and Managing Partner | Aviva Capital

Lisa Richter is a co-founder and managing partner of Avivar Capital, an SEC-registered investment advisor focused exclusively on the design and execution of impact investing strategies. Clients range from small to the nation's largest independent and community foundations, banks, institutional investors and families, with interests ranging from place-based or thematic impact investing outcomes to values alignment for traditional investment portfolios targeting market-rate expected returns. Supporting institutional and family investors to advance health and healthy communities has been a central theme of Lisa’s work. She authored the Grantmakers In Health Guide to Impact Investing and co-authored several guides to community foundation and donor impact investing. She co-designed the Mission Investors Exchange Impact Investing Institute and continues as a lead impact investing trainer with partner organizations nationwide. Lisa holds a BA and an MBA from the University of Chicago.

Presentation

Marco Baptista, PhD

Director, Research Programs | Michael J. Fox Foundation

Marco Baptista joined the Foundation in 2012. As Vice President, Research Programs, Marco currently leads the Foundation's priority interest in understanding LRRK2, a major genetic form of parkinsonism. He also oversees strategies to identify promising therapies for Parkinson's disease. Previously, Marco was an Associate Principal Scientist at Merck leading a preclinical Parkinson's program that helped develop field-enabling resources that were key in us better understanding the genetic causes of Parkinson’s disease. Marco brings drug discovery knowledge and expertise to the Foundation that helps drive the funding of translational research. Marco earned an undergraduate degree in Psychology from the University of Toronto and a PhD in Neuroscience from McMaster University, Canada. Marco’s postdoctoral research was conducted at The Scripps Research Institute in La Jolla.

Jill O’Donnell-Tormey, PhD

CEO and Director of Scientific Affairs | Cancer Research Institute

Jill O’Donnell-Tormey, Ph.D., is chief executive officer and director of scientific affairs of the Cancer Research Institute (CRI), a nonprofit organization founded in 1953 that is today the global leader in supporting and coordinating research aimed at harnessing the immune system’s power to conquer all cancers. She joined the organization in 1987, and has been chief executive since 1993. Prior to joining CRI, she served as a research associate in the department of medicine at Cornell University Medical College and as a postdoctoral fellow in the laboratory of cellular physiology and immunology at The Rockefeller University.

Jason Menzo

Chief Operating Officer | Foundation Fighting Blindness

Jason Menzo is the Chief Operating Officer for Foundation Fighting Blindness, the world’s largest private funder of research for treatments and cures of blinding retinal degenerative diseases. The Foundation has raised nearly $800 million since its inception and is currently funding more than 90 research projects globally. Fighting Blindness has also launched the RD Fund with over $70 million under management to fuel startup companies in the retinal degeneration space. Prior to joining the Foundation, Jason was a co-founder and Business Unit Head of Sun Ophthalmics. As one of four founding members, he led the commercial team buildout launching the business into the well-known entity it is today. He was also a founding member of the US business for Nicox SA, where he led the commercial launches of several ophthalmic brands and helped successfully exit by acquisition (Valeant Pharmaceuticals, 2014). He has previously held positions of increasing responsibility with Bausch + Lomb, Inspire Pharmaceuticals, and Bayer Healthcare.

March 31, Tuesday

12:00 – 2:00 PM ET

RFA Development and Marketing

In this session, we will explore best practices for RFA development for new scientific areas, and marketing existing and new RFAs. In particular, speakers will discuss how to get input from innovators in a field new to the funder for a new RFA, key elements of a well-written RFA, and novel ideas for marketing your RFA to both traditional and expanded audiences. We will also examine this topic from the viewpoint of diversity and how RFAs can be written and marketed to ensure that underrepresented groups are reached and feel encouraged to participate.

Moderator

Caren Heller, MD

Chief Scientific Officer | Crohn's & Colitis Foundation

Presenters

Stephanie Endy, MA

Assoc. Vice President for Research | Office of Research Administration | Case Western Reserve University

Stephanie Endy is the Associate Vice President for Research at Case Western Reserve University. She oversees research administration, which includes pre- and post-award services, human research protections, responsible conduct of research, and conflict of interest, among others. In this role, Stephanie works closely with the associate deans for research from all the schools and the college to promote research opportunities for CWRU faculty. She also coordinates strategic initiatives, such as reducing administrative workload and university-wide initiatives to support faculty research. Stephanie has been a certified Research Administrator since 2006 and joined Case Western Reserve in 2015.

Presentation

Michele Cleary, PhD

Chief Executive Officer | Mark Foundation for Cancer Research

Michele Cleary joined The Mark Foundation as CEO in January 2017. Prior to that, she was Vice President of Clinical Translation Technologies & Operations at Bristol-Myers Squibb where she led biomarker research for cancer and other diseases. Before joining BMS, Michele served in several leadership roles at Merck & Co., Inc., overseeing the development and application of innovative platforms for understanding cancer pathways, identification of new therapeutic approaches for multiple diseases, and functional validation of novel drug targets identified through human genetics. At Merck, her teams also conducted pioneering work on microRNAs as therapeutic targets and biomarkers in cancer. Michele received a PhD in Molecular Microbiology and Genetics from Stony Brook University and completed graduate research at Cold Spring Harbor Laboratory followed by postdoctoral training at Princeton University. She is co-author of more than 50 primary research papers and co-inventor on multiple patents with direct application to cancer drug development.

Presentation

Carole Wegner, PhD, HCLD

Senior Vice President, Research and Grants Administration | The V Foundation

Carole Wegner, PhD, HCLD, is the Senior Vice President of Research and Grants Administration for The V Foundation. She uses her more than 20 years of experience as a research scientist, clinical lab director and patient advocate to help find and support researchers who are looking for cancer cures. She received a BS Degree in Zoology from Kent State and a PhD in Physiology from Penn State University. In her post-doctoral work at MD Anderson Cancer Center, she studied the molecular mechanisms of embryo implantation as a model for understanding tumor invasion. As a clinical IVF lab director for three clinics in two states, her daily interaction with patients gave her a deep understanding of the importance of effective medical communication to empower patients and help them achieve the best possible medical outcomes. At the V Foundation, this experience informs her work with research grant recipients to improve their scientific communication skills for public outreach.

Presentation

2:30 – 4:30 PM ET

Patient Engagement

This session will focus on the strengthening trend of incorporating the patient voice and values into funded research efforts. Patients are invited to be involved in various steps along the project-funding continuum: from engaging in setting research priorities, evaluating research proposals, participating in the research team, and receiving updates and feedback during their participation in clinical research projects.

Moderator

Krissa Smith , PhD

Director, Research Programs | Susan G. Komen

Presenters

Michelle Johnston-Fleece, MPH

Senior Program Officer | Patient-Centered Outcomes Research Institute

Michelle Johnston-Fleece is Senior Program Officer at the Patient-Centered Outcomes Research Institute (PCORI) where she plays a leadership role in advancing the science of public and patient engagement. Michelle served previously at PCORI as an Engagement Officer, managing the engagement activities within the Improving Healthcare Systems portfolio of clinical comparative effectiveness research projects. She was previously a Senior Program Officer for the National Academy of Medicine, where she directed the Care Culture and Decision-making Innovation Collaborative, a multistakeholder convening activity that brings together patients, families, clinicians, and technology and communications professionals to promote patient- and family-centered care. In addition, she has served as the director of policy and advocacy at Cancer Support Community; led the patient experience improvement efforts for Einstein Healthcare Network; and was Senior Policy and Research Analyst at the American Board of Internal Medicine and ABIM Foundation. Michelle holds an MPH in health systems and policy from the UMDNJ School of Public Health and a BA in sociology and media studies from New York University.

Presentation

Alana Welm, PhD

Professor of Oncological Sciences | University of Utah School of Medicine

Dr. Welm received her undergraduate degree in Microbiology from the University of Montana. She then completed a PhD in Cell and Molecular Biology at Baylor College of Medicine in Houston, TX under the supervision of Gretchen Darlington, PhD. She then went on to conduct postdoctoral training in nobel laureate Dr. J. Michael Bishop’s laboratory at the University of California, San Francisco, where her work focused on developing new models of breast cancer metastasis. Dr. Welm started her laboratory at the University of Utah’s Huntsman Cancer Institute in 2007, and was promoted to Associate Professor with tenure in 2013 and to full Professor in 2019. She now holds the Ralph E. and Willia T. Main Presidential Endowed Chair in Cancer Research and is Co-Director of the Cell Response and Regulation Program at Huntsman Cancer Institute. She has been awarded multiple grants from the National Cancer Institute and has received DOD Era of Hope Scholar and Susan G. Komen Scholar awards. She serves on advisory boards for the PDX-Integrator Group (Cambridge, United Kingdom), the J. Michael Bishop Institute for Cancer Research (Chengdu, China), the Baylor College of Medicine (BCM) Patient-Derived Xenograft and Advanced in vivo Models Core, the BCM SPORE, and the Indiana University Precision Health Initiative-Triple Negative Breast Cancer Center for Excellence.The research in Dr. Welm’s laboratory is focused on solving the problem of breast cancer metastasis using in vivo modeling of mouse and human breast cancers. Dr. Welm’s group discovered that the Ron kinase pathway is an important facilitator of breast cancer metastasis through its unique dual function in tumor cells and in regulation of the host anti-tumor immune response. Current areas of research include (1) pre-clinical studies of various Ron inhibitors for treatment and prevention of metastatic breast cancer; (2) pre-clinical and early clinical studies of the Ron/Met inhibitor BMS777607/ASLAN002 in bone metastatic cancers; (3) discovering molecular mechanisms by which Ron kinases promote metastasis through cell-autonomous and non cell-autonomous pathways; and (4) refining “precision medicine” for metastatic breast cancer using functional assays in patient-derived breast tumor grafts.

Presentation

Sandi Spivey, MBA

Advocate | Metastatic Breast Cancer Patient Advisory Council

Sandi began her advocacy efforts in breast cancer in 1995 after receiving a diagnosis of stage 2 breast cancer at the age of 42. She was a board member for the Y-ME Orange County Breast Cancer affiliate for five years. Her interest in research grew as she attended several National Breast Cancer Coalition’s annual advocacy conferences where she also learned how to become a legislative advocate. In 1998, at the age of 45, Sandi was diagnosed with metastatic breast cancer to her bones. At that time, she redoubled her advocacy involvement.She currently serves on the Komen Advocates in Science Steering Committee, the Breast Cancer Disease Orientation Team at University of California, Irvine, the MBC Alliance Patient Advocate Advisory Group, the Komen MBC Advisory Group and the Orange County Komen MBC program committee. She has participated in over 20 scientific funding reviews for breast cancer research for Komen, the Department of Defense and METAvivor.As a peer helpline volunteer for SHARE, Living Beyond Breast Cancer and After Breast Cancer Diagnosis, Sandi has provided one-to-one support to nearly 100 metastatic breast cancer patients and caregivers. She has found that many callers want to feel like they are not alone and find it empowering they are fully understood.Sandi lives in Laguna Niguel, CA and has been married to Bill since 1975. They have two grown children and two grandchildren. She enjoys writing (including her catsncancer.com blog), traveling and volunteering at a regional animal shelter.

Presentation

Diana Shineman, PhD

Vice President of Research and Medical Programs | Tourette Association of America

Diana Shineman, PhD is the Vice President of Research and Medical Programs at the Tourette Association of America (TAA). She oversees all programs, activities and staff within the Research and Medical Programs Department, which endeavors to advance the understanding of Tourette & Tic Disorders and facilitate the development of effective therapies for these disorders. Prior to joining TAA, Diana spent 9 years at the Alzheimer’s Drug Discovery Foundation directing the Foundation’s drug discovery and development grant programs and strategic initiatives with foundations, government and industry partners. Diana earned a Ph.D. in Cell and Molecular Biology from the University of Pennsylvania working in the Center for Neurodegenerative Disease Research led by Drs. Virginia Lee and John Trojanowski. She received a B.A. in Biology with a Nutrition concentration from Cornell University and was named a Howard Hughes Research Scholar. In addition to maintaining various professional memberships, Diana has also authored numerous articles and peer-reviewed publications.

Presentation

Dean Frohlich, PhD

Scientific Review Officer | Conquer Cancer, the ASCO Foundation

Dr. Frohlich is currently the Scientific Review Officer for the Conquer Cancer Foundation of the American Society of Clinical Oncology. From 2010 to 2013, he was a Program Administrator for Stand Up to Cancer at the American Association for Cancer Research. From 2004 to 2010, he conducted postdoctoral research at the University of Michigan and the National Center for Complementary and Alternative Medicine (NCCAM) at the National Institutes of Health on the role of the transcription factor NRF2 in oxidative stress and hormone metabolism in prostate cancer. From 1996 to 2004, Dr. Frohlich earned his BS degree in Clinical Laboratory Science with an emphasis on Chemistry from the University of North Dakota and his PhD in Biochemistry and Molecular Biology also from the University of North Dakota.

Presentation

Angela McCarty, MS

Associate Manager, Peer Review | American Heart Association

Angela has been with American Heart Association for 5 years and in 2016 transitioned into the role of Associate Manager Peer Review where she came on board to assist with fully launching the Lay Stakeholders in Research Initiative. While in this role, she is instrumental in recruiting and engagement, retaining and educating patients, caregivers, advocates and thought-leaders involving the AHA Research landscape. She has effectively increased volunteer engagement in research by 50% within the first 2 years of the launch. Through strategic efforts, Angela along with Elizabeth Cooper-Reelhorn has successfully established recognition for the Initiative in the AHA Science Operations which opens the door for greater significance throughout the entire organization. She earned her B.S. degree in Health Sciences and MS in Business at Texas A&M University-Commerce.

Presentation

Glendon Zinser, PhD

Scientific Grants Manager | Susan G. Komen

As Manager, Scientific Programs, he is responsible for oversight of the Komen Scholars Program. Dr. Zinser helps assess and identify programs/partnerships aligning with Komen’s mission, works closely with many of Komen’s nonprofit research partners, and assists in developing new scientific programs/initiatives. In addition, he works with Komen’s Development team to help foster donor relations and fundraising. Prior to joining Komen, Dr. Zinser was a Research Assistant Professor at the University of Cincinnati. He earned his B.S. in Biology from Ball State University and his Ph.D. in Molecular and Cellular Biology from the University of Notre Dame.

Presentation