On September 19 Stanford University Program in Human Biology hosted a one-day Commons Assembly built on the momentum of the 2015 Paris Assembly: Connecting Open Research, Open Education, and Open Social Impact. The Commons Assembly featured the work of the 2015 Sage Scholars – the group of “young investigators” nominated to attend the Paris Assembly to showcase their work – together with their mentors.
Olga Werby provides a wonderful summary of the day here. Presentation titles are linked to videos of the presentations.
Themes: ICT and Health; Delivering Health to Hard-to-serve Populations; Rare/Orphan Diseases; and Health, Education, Patient Data, and Advocacy
Keynote: Stephen Friend, Sage Bionetworks: Keynote
Speakers:
Please click on the presentation title to see a video of the presentation.
Annette Bakker, Children’s Tumor Foundation: “Are we ready for the change that we need to find effective treatments for orphan disease?”
Ethan Watters, Journalist/Author: “Crazy Like Us: How America Exports PTSD — The Cultural Connection in Reacting to Trauma”
Josh Whitkin, Murdoch University. Bonderlab.com: “Engaging Young Men in Digital Health Interventions: Failures and Successes”
Mentors:
Eri Gentry, BioCurious, IFTF: “The Democratization of Research, from Open Source Journals to Community Labs”
Peter Kapitein, Inspire2Live: “Why Patient Advocacy Makes the Difference in Improving Healthcare”
Teri Melese, Associate Professor Medicine & Rady School of Management, Assistant Vice Chancellor, Industry Research Alliances, UCSD
Robert Siegel, Stanford University: “Education 3.0”
Theodora Varvarigou, National Technical University of Athens: “Semantic-aware, Social-boosted, Data-driven Health Advancements”
Olga Werby, Pipsqueak Productions, LLC: “The Power of YES”
Scholars:
Nicole Dalal, Stanford University: “Laboratory Activities for Broadened Scientific Inquiry (LABScI) — Teaching Science Labs in Pediatric Hospital Schools.”
Anjan Debnath, UCSD: “Discovery of New Drug Leads for Rare Parasitic Diseases”
Stephanie Fraley, UCSD: “Enabling Accessible and Sensitive Sequence Profiling for Systems Medicine”
Jair Lage de Siqueira-Neto, UCSD, “Bringing Hope for the 10 Million People Infected with Life-threatening Kinetoplastid Parasites”
Laura-Isobel McCall, UCSD: “Targeting Leishmaniasis: Disease Models and Drug Repurposing”
Gavin McCormick, UCB, Watt Time: “Small Data: What Modern Econometrics Means for Rapid Collaboration”
Piarella Peralta, Inspire2Live: “Joining Efforts in Solving Cancer, International Network of stakeholders”
Gaston Remmers, Inspire2Live, HABITUS: “Patients as Researchers: Accelerating Innovation in Food and Health Beyond the Evidence Based Paradigm”
Laurie Rumker, Stanford University, “Before and After the Flood: Stability and Resilience of the Human Gut Microbiota”
Charvi Shetty, KNOX Medical Diagnostics: “Taking Control Over Your Own Health”
BIOS OF PARTICIPANTS
Annette Bakker, Ph.D.
President and Chief Scientific Officer of Children’s Tumor Foundation, http://www.ctf.org/
Annette Bakker, the Children’s Tumor Foundation’s President and Chief Scientific Officer, holds a PhD in cell biology from the University of Antwerp. Her past experience includes serving as Oncology Group Leader at Janssen Pharmaceutica, and postdoctoral fellowships at Yale University and La Salpetriere, Paris. Most recently, Dr. Bakker lived in Siena, Italy and served as the Oncology Head for Siena Biotech, where she created an oncology program from the ground up and managed a large oncology research initiative at the University of Verona. Dr. Bakker’s research has been internationally recognized by more than 30 peer-reviewed papers, patents, and awards, and she has extensive experience liaising and negotiating with biotechnology and pharmaceutical companies. In her role at the Children’s Tumor Foundation, Dr. Bakker will continue to seek innovative breakthroughs in drug development and will effectively implement her personal network of world class centers of excellence to advance neurofibromatosis research and attract top scientists and clinicians to the field of NF. Dr. Bakker is originally from Belgium, speaks four languages (English, French, Dutch, and Italian), and now lives in Brooklyn, New York with her partner, Armelle Pindon, and their two children, Camille and Brice.
Anjan Debnath, Ph.D.
Dr. Debnath’s research focuses on studying Entamoeba histolytica, Giardia lamblia and a free-living ameba Naegleria fowleri that leads to a universally fatal infection Primary Amebic Meningoencephalitis (PAM). He has a broad background in parasitology, with specific training and expertise in ameba, giardia and naegleria drug discovery research. Dr. Debnath developed the first microtiter-based high-throughput screens (HTS) for E. histolytica and Naegleria, which use the luciferase reaction to detect ATP regeneration by the parasite, and have been shown to accurately identify amebicidal compounds. He has experience in drug repurposing and previously identified an FDA-approved oral drug, auranofin, for the treatment of amebiasis and giardiasis. This drug, with support from the NIAID, has now entered phase II clinical trial in Bangladesh for amebiasis and giardiasis. As a central component in a pre-clinical drug discovery pipeline for PAM, Dr. Debnath identified a new drug lead Corifungin with better activity than Amphotericin B, the current drug of choice. He was responsible for successful Orphan Drug status of auranofin and Corifungin by the USFDA for treatment of amebiasis and PAM. Dr. Debnath is also the director of Amoebozoa Core at the Center for Discovery and Innovation in Parasitic Diseases (CDIPD) at UCSD’s Skaggs School of Pharmacy and Pharmaceutical Sciences and leading collaborations with both academic groups and non-profit organizations.
Nicole Dalal
Stanford India Health Policy Initiative (SIHPI), Stanford Health Advocacy & Research in the Emergency Department (SHARED), Stanford University
A Bay Area native, Nicole Dalal is a sophomore Human Biology major who plans to pursue a career in medicine. She loves seeing the application of the biological and psychological concepts she learns in class in the real world, especially in relation to health behaviors and outcomes. Outside of class, Nicole loves planning cultural events with Stanford Sanskriti, dancing with Stanford Dil Se, volunteering at Lucile Packard Children’s Hospital and in the Stanford Emergency Department, and soaking up the sun on the beautiful Stanford campus. She is very excited for the summer of her dreams with the Stanford India Health Policy Initiative and cannot wait to get started working in the field!
Eri Gentry
BioCurious Co-founder, Maker Pro Co-author, Institute for the Future Biofuturist, Summer.org board
Eri Gentry helps technology find the people who love it. She is a proponent of technology democratization, citizen science, and “hacking” medicine. Her work has been covered by the New York Times, Forbes, Wired, and The Atlantic, and in the books Biopunk, Regenesis, and The Nature of the Future. Recently, Eri was included on Techonomy’s Top Ten list for 2013 list and named a White House Champion of Change. Eri is a Research Manager at the Palo Alto think tank, the Institute for the Future and co-founder of BioCurious, the first hackerspace for biology. She thinks about the future of being human, behavioral economics, and how to think better. Eri was previously VP of Open Innovation at Scanadu, a Silicon Valley startup bringing medical tools for the people to the people, Community Manager at Genomera, a startup putting crowdsourced clinical trials online, and CEO, cofounder of Livly, a cancer research company on a mission to end killer diseases.
Stephanie Fraley, Ph.D.
Assistant Professor, Department of Bioengineering, UCSD
The overarching goal of Dr. Fraley’s lab research is to develop approaches that embrace, measure, and unravel complex biological contexts to improve physiologically relevant insight into disease mechanisms. To meet these goals, a portion of her research is dedicated to technological innovation that improves the quality, quantity, and access to health-generating tools. With these tools, Dr. Fraley aims to integrate information across basic and clinical research as well as democratize technologies such that they can serve wider populations. In her postdoctoral work, Dr. Fraley developed a technology that enables rapid identification of hundreds of bacterial pathogens more sensitively than any other technology. Because of the simple principles that Dr. Fraley’s technology operates on, it is highly amenable to portability and use in hard-to-reach areas.
Stephen Friend, M.D/Ph.D.
President, Co-Founder and Director of Sage Bionetworks, http://sagebaseold.wpengine.com/
Dr. Friend is the President of Sage Bionetworks, a non-profit organization that provides the tools and environment to conduct dynamic, large-scale collaborative biomedical research. He is an authority in the field of cancer biology and a pioneer in the field of the genetics of gene expression, integrating system biology approaches to complex diseases. Dr. Friend believes that successful biomedical research requires the active participation from all stakeholders. He is reimagining the role of citizens in the research process and is building tools to empower them to contribute both their data and expertise as they see fit. He also believes in the importance of iteratively generating and testing novel hypotheses transparently and collaboratively. Under his leadership, Sage Bionetworks has developed an open-source technology platform, called Synapse, for data-intensive analysis, sharing and reuse, enabling researchers to perform cutting edge computational biology and research. Dr. Friend is engaging the community to crowd-source solutions to complex biomedical questions through targeted DREAM challenges.
Previously Dr. Friend was Senior Vice President and Franchise Head for Oncology Research at Merck & Co., Inc. where he led Merck’s Basic Cancer Research efforts. Formerly Dr. Friend along with Dr. Hartwell founded and co-led the Fred Hutchinson Cancer Research Center’s “Seattle Project”, an advanced institute for drug discovery and later they co-founded Rosetta Inpharmatics with Dr. Leroy Hood. Dr. Friend also held faculty positions at Harvard Medical School from 1987 to 1995 and at Massachusetts General Hospital from 1990 to 1995. He received his M.D/Ph.D. from Indiana University. Dr. Friend was named an Ashoka Fellow for his work at Sage Bionetworks.
Peter Kapitein, Ph.D.
Peter Kapitein is President and Patient Advocate of Inspire2Live
http://inspire2live.org/peter-kapitein/
Peter Kapitein is one of the initiators of Inspire2Live. What started as an initiative of 66 bikers who on one day (6-6-6) cycled up mount Alpe d’Huez six times, is now a huge event with 4,500 cyclists raising 20 million euros in 2011. Peter plays an active role in the organisation. Each year he gives some 100 talks about living with cancer and other cancer-related subjects. His audiences are not only cancer patients but also clinicians, scientists, nurses, business people and so on. Speaking either in Dutch or in English, Peter always inspires his audience and helps them do what they really want and what really matters to them. To do things that are about the most urgent question in life: ‘What do you do for other people?’ A dream, an idea, a target. That’s what it is all about. To transform the most beautiful dream into action. To make the first step and see that others will make the next one. Once they get moving, the ultimate target immediately becomes visible and real.
Jair Lage de Siqueira-Neto, Ph.D.
Assistant Adjunct Professor, Skaggs School of Pharmacy and Pharmaceutical Sciences, UCSD
Dr. Siqueira-Neto’s background is in molecular biology of microorganisms, with specific training and expertise in drug discovery and development for neglected tropical diseases. He pioneered the development of high-content screening assays against intracellular Trypanosoma cruzi and Leishmania sp, having screened over 1,000,000 chemical entities to date against parasites. As an Assistant Adjunct Professor and the Kinetoplastid Core Director at the highly collaborative Center for Discovery and Innovation in Parasitic Diseases (CDIPD), Dr. Siqueira-Neto’s mission is to discover better treatment options for those affected by neglected diseases, particularly Chagas disease, leishmaniasis and Human African Trypanosomiasis. Aligned with these research interests, he has experience collaborating with pharmaceutical companies, exemplified by a project with the Novartis Research Foundation (GNF) funded by an NIH R01 grant; he has also led a team of graduate students from Stanford University and UC Berkeley to develop a Startup (SolPaDis) with the mission of designing an innovative and sustainable approach to develop new chemotherapies against neglected diseases.
Teri Melese, Ph.D.
Asst. Vice Chancellor, Industry Research Alliances
Office of Research Affairs, University of California, San Diego
Dr. Melese joined UC San Diego in 2013 in a newly created position of Assistant Vice Chancellor, Industry Research Alliances. She spent eleven years at UC San Francisco as a Professor in the Department of Medicine and was the Director of Business Strategy and Development for the School of Medicine. She crafted and implemented research collaborations between faculty in the major campus Institutes and Centers and Industry. Also served on the Executive Leadership Team of the Helen Diller Family Comprehensive Cancer Center. Before joining UCSF in 2001, Dr. Melese ran an independent research laboratory in yeast genetics and molecular biology at Columbia University for 10 years and was awarded the National Science Foundation Young Presidential Investigator Award. In 1997, she left Columbia University to be founding member of a venture-backed startup company, Iconix Biosciences (acquired by Entelos), in Silicon Valley. Dr. Melese holds four patents for biomedical technologies and small molecule inhibitors. A.B. from the University of California, Berkeley, Ph.D. in Cell Biology from UCSF (Regents Fellow), and received an American Cancer Senior Postdoctoral Fellowship while at the UC Los Angeles.
Laura-Isobel McCall, Ph.D.
Postdoctoral Scholar, Skaggs School of Pharmacy and Pharmaceutical Sciences, UCSD
Dr. McCall has over eight years of experience using cutting-edge technology to investigate neglected tropical diseases. Specifically, she uses high- throughput screening and high content assays to identify novel compounds active against the parasites Leishmania, Trypanosoma cruzi and Trypanosoma brucei. Active compounds are then tested in bioluminescent pre-clinical models of disease. In addition, Dr. McCall’s work combines modern “omics” techniques (genomic, transcriptomic, proteomic and metabolomic analysis, including next-generation sequencing and imaging mass spectrometry) to identify the factors that mediate disease development and disease outcome in a clinical setting; this information is then integrated into drug discovery research and vaccine development for these neglected diseases.
Gavin McCormick
Co-founder and Executive Director, WattTime.org
http://www.echoinggreen.org/fellows/gavin-mccormick
Academic and social entrepreneur, Gavin applies behavioral economics to energy markets to develop ultra-low-cost techniques to deliver more renewable power and energy efficiency at scale. While a PhD student at UC Berkeley, Gavin discovered green power can be provided at much lower cost simply by correcting for the effects of known cognitive biases on electricity market incentive structures. As co-founder and Executive Director of WattTime, Gavin now helps connect people and smart devices to this novel technique for drawing cleaner electricity from the regular power grid. His prior work with the US Department of Energy’s Pacific Northwest National Lab included applying behavioral economics to increase the impact of existing government energy initiatives. Gavin’s energy industry experience also involved advising large industrial clients through NERA Economic Consulting. He is a graduate of Williams College.
Piarella Peralta
Patient Advocate, Inspire2Live
http://inspire2live.org/patient-advocacy-2/patient-advocate-piarella-peralta/
Piarella is a social psychologist. She has been involved with inspire2live since 2010, after her family experienced firsthand the tragedy of cancer.
Gaston Remmers, Ph.D.
Director of HABITUS — enabling healthy habitat development, http://habitus.nu/english
Patient Advocate, Inspire2Live, http://inspire2live.org/patient-advocacy-2/gaston-remmers/
Co-founder, Platform Patient and Food Netherlands (www.patientenvoeding.nl) Dr. Remmers has lived through tongue cancer, heart failure and osteoarthristis. He is an agroecologist and sociologist by training, and a transition worker by nature, with over 25 years of experience in the field of agriculture, food and sustainable habitat development in urbanized areas. His focus is on creating momentum to lever change in the health care and agrofood system in one go – with patients at the core of it. He was the former Chair of Eco-Effective Entrepreneurship in Urban Environments at CAH Vilentum University of Applied Science in Almere / Amsterdam. He lives in Amsterdam, The Netherlands.
Laurie Rumker
Laurie Rumker is a student at Stanford University concurrently pursuing a Bachelor of Arts in Human Biology with a concentration in Immunology, Infectious Disease and Global Health and a Master of Science in Biomedical Informatics in the Stanford School of Medicine. Beyond her coursework, Laurie was Co-Editor-in-Chief of the Stanford Undergraduate Research Journal for two years, she was Co-President of Cap and Gown, Stanford’s academic and leadership honor society for women, and she co-founded the nonprofit organization Friends of Minzoto, which supports education, health and community development in Dungu, Democratic Republic of Congo. For her undergraduate honors thesis research on the human microbiome, Laurie was recognized in June, 2014 by the Program in Human Biology with the Kirsten Frohnmayer Research Prize awarded annually to two juniors based on academic excellence, true altruism and the potential to make a difference in society through research. In June, 2015, Laurie was awarded a Firestone Medal, given by Stanford University to the finest honors projects in social science, science and engineering.
Ilona is a manager at De Nederlandsche Bank and works as a volunteer at Inspire2Live. Together with Peter Kapitein, she ensures the coherence and focus of many projects and activities that this very inspiring club Patient Advocates deals with. In particular, Ilona works with the role of the patient and expansion abroad. She also coordinates various conferences for the Patient Advocates/I2L.
Charvi Shetty
Founder at KNOX Medical Diagnostics, http://knox.co/
A former software and algorithm engineer for Genentech, Charvi’s passion is in examining clinical needs and identifying areas in which engineering design and disruptive business models can improve the quality of medical care. Charvi is the founder of KNOX Medical Diagnostics, which has developed a cloud-connected mobile asthma management with a bluetooth enabled device to measure lung function and capacity in kids.
Robert Siegel, Ph.D.
Professor at the Department of Microbiology and Immunology, Program in Human Biology, Center for African Studies, and Woods Institute for the Environment
Stanford University
http://web.stanford.edu/~siegelr/
Dr. Siegel’s work is primarily involved in medical education and curricular development, especially in the areas of infectious disease, virology, HIV, and molecular biology. Projects included electronic applications to science education, three dimensional model building, service learning, and the development of undergraduate research projects.
Theodora Varvarigou, Ph.D.
Professor at National Technical University of Athens and Computer Software Consultant
Prof. Theodora A. Varvarigou received the B. Tech degree from the National Technical University of Athens, Athens, Greece in 1988, the MS degrees in Electrical Engineering (1989) and in Computer Science (1991) from Stanford University, Stanford, California in 1989 and the Ph.D. degree from Stanford University as well in 1991. She worked at AT&T Bell Labs, Holmdel, New Jersey between 1991 and 1995. Between 1995 and 1997 she worked as an Assistant Professor at the Technical University of Crete, Chania, Greece. Since 1997 she was elected as an Assistant Professor while since 2007 she is a Professor at the National Technical University of Athens, and Director of the Postgraduate Course “Engineering Economics Systems”. Prof. Varvarigou has great experience in the area of semantic web technologies, scheduling over distributed platforms, embedded systems and grid computing. In this area, she has published more than 150 papers in leading journals and conferences. She has participated and coordinated several EU funded projects, related to subject of the IRMOS project such as POLYMNIA, Akogrimo, NextGRID, BEinGRID, Memphis, MKBEEM, MARIDES, CHALLENGERS, FIDIS, and others. http://grid.ece.ntua.gr/?
Ethan Watters
Ethan Watters is an author and journalist who has spent the last two decades writing about psychiatry and social psychology. Most recently, he is the author of “Crazy Like Us: The Globalization of the American Psyche”. Watters is a contributor to The New York Times Magazine, Discover, Men’s Journal, Details, Wired, and This American Life. His writing on the new research surrounding epigenetics was been featured in the Best American Science and Nature Writing series. Watters is co-founder (along with Ethan Canin and Po Bronson) of the San Francisco Writers’ Grotto, a workspace for journalists, novelists, poets and filmmakers. He lives in San Francisco with his wife and children.
Olga Werby, Ed.D.
President at Pipsqueak Productions, LLC http://pipsqueak.com/
Olga is a teacher, a writer, a thinker, a product designer, and a problem solver, not necessarily in that order.
Josh Whitkin, Ph.D.
Josh Whitkin is a designer/producer of next-generation apps for health. Dr. Whitkin’s research explores improved alignment between engagement and efficacy in behavior change apps (e.g. CBT-based interventions to prevent anxiety and depression, obesity, self-efficacy). Dr. Whitkin has been PI on several >$2m NIH SBIR grants, collaborating with faculty from UCSF, Stanford, and Radboud University. Dr. Whitkin’s methods combine decades of video game design and production experience with innovative academic design researh methods e.g. cocreation and autoethnography. Dr. Whitkin’s doctorate was conferred by the School of Design at Curtin University in December 2013, on the topic of Activity-Goal Alignment in serious game design, and was recruited as permanent faculty in the School of Media, Communications, and Culture at Murdoch University. A commercial video game developer since 1984, Dr. Whitkin has worked for Xeodesign, EA, NVidia, Disney, Hasbro, NASA on PCs, consoles, and a wide array of innovative mobile devices, including early smartphones, VR, electronic toys and mobile phones. Dr. Whitkin has credits in million-selling hit games Descent, Ultima Underworld, F22, and over 20 other published titles. An early technology expert in video game art, Dr. Whitkin wrote the first book on 3D art for games, was an invited columnist for the leading game industry trade magazine, and was twice invited to the Game Developer’s Conference Advisory Board.