TRNDS 2017 Speakers

Meet the regional and national leaders in rare diseases, health technologies and clinical trials

Erika Augustine, TRNDS, UR

Erika F. Augustine

Associate Director, URMC Center for Human Experimental Therapeutics

Erika F. Augustine is Associate Director of the Center for Human Experimental Therapeutics at the University of Rochester Medical Center. A movement disorders-trained Child Neurologist, her clinical research focuses on advancing therapeutic development and methodology for rare pediatric neurological disorders through interdisciplinary collaboration. Dr. Augustine currently leads clinical programs developing novel therapeutics for the neuronal ceroid lipofuscinoses and co-directs the University of Rochester Hereditary Ataxia Clinic.

Amanda Christini

President & Co-founder, Blackfynn

Amanda is the President and co-founder of Blackfynn, a life sciences company building a cloud-based data integration and analytics platform to accelerate disease-modifying therapeutic development and improve clinical care for patients with neurologic diseases. Amanda has 20 years of experience in the biotechnology industry, clinical medicine, the business and strategy of medicine, and leveraging technology to change clinical practice. Prior to co-founding Blackfynn, Amanda was on faculty at the University of Pennsylvania Department of Medicine, and was Director of Strategic Initiatives at the Penn Medicine Center for Healthcare Innovation. Before her medical career, Amanda led business development for over a decade at early-stage biotechnology companies.

Arthur Combs

Chief Medical Officer, mc10

Arthur Combs, MD, FCCP, FCCM is a physician executive with over 20 years’ experience in academic clinical practice as an ICU Director. Since his fellowship at memorial Sloan-Kettering Cancer Center he has been appointed to the faculties of George Washington, Georgetown, Medical College of Pennsylvania and Washington University. In industry, he has served as Medical Director of Mallinckrodt’s $1.3 billion Respiratory Care business and subsequently as Executive Vice President of R&D. Dr. Combs served as a consultant to numerous medical products companies including HP Medical, Agilent, Philips Medical Systems, Edwards Life Sciences, SomaLogic, Kantar Health and Nova Biomedical. Dr. Combs has served as CMO for Everest Biomedical, BMEYE, BV, and CEO of Grove Instruments, Inc. Dr. Combs, now Chief Medical Officer of mc10, brings 20 years of direct product development experience in medical devices

Ray Dorsey

Director, URMC Center for Human Experimental Therapeutics

Dr. Ray Dorsey is the David M. Levy Professor of Neurology and Director of CHET, a center that seeks to advance knowledge and improve health through ground-breaking research, at the University of Rochester Medical Center.   Through novel applications of technology, he and his colleagues seek to enable anyone anywhere to receive care, participate in research, and benefit from therapeutic advances. Dr. Dorsey’s research has been published in leading medical, neurology, and economic journals and has been featured on National Public Radio and in The New York Times and The Wall Street Journal.

Tim Ehrhard

Director of Information Technology, National Organization for Rare Disorders

Timothy Ehrhard joined NORD in 2016 as the Director of Information Technology, leading development and support for of all of NORD. Prior to NORD, Tim had over 25 years of experience in the positions of Chief Information Officer and Director of Information Technology for several public companies in the automotive, relocation and legal document solutions management industries. Tim has lead the agile development of several award winning applications in their respective industries. Tim holds a bachelor’s degree of science from Rochester Institute of Technology.

Jen Farmer - FARA

Jennifer Farmer

Executive Director, Friedreich’s Ataxia Research Alliance

Jennifer has a Master’s degree in Genetic Counseling, and prior to joining Friedreich’s Ataxia Research Alliance (FARA), she worked at the University of Pennsylvania and Children’s Hospital of Philadelphia. She is Co-Founder and Coordinator for the Collaborative Clinical Research Network in FA. This network is in its 13th year with natural history data, clinical outcome measures, biomarkers and biorepository on more than 900 individuals with Friedreich’s Ataxia. In addition, Jennifer established FARA’s Patient Registry in 2006, a patient-driven registry that has more than 3000 participants worldwide. In her current role at FARA as Executive Director, she carries out the strategic mission of the organization through administering FARA’s research grant, scientific conference, patient registry, and education and awareness programs.

Luke Gelinas

Petrie-Flom Center/Harvard Catalyst Fellow

Harvard Law SchoolLuke Gelinas joined the Petrie-Flom Center in 2015 as the first Petrie-Flom Center/Harvard Catalyst Fellow in Clinical Research Ethics. He earned his PhD in 2014 from the University of Toronto, where he was a graduate fellow at the University of Toronto’s Centre for Ethics. Luke’s research interests focus primarily on the concept of informed consent. His past scholarship has explored the ethics of exploiting common heuristics and biases to nudge people during the consent process, as well as the conditions under which consent can justifiably be waived in research with humans. Currently, his work advances several projects as part of the Harvard Catalyst Regulatory Foundations, Ethics, and Law Program, with a particular emphasis on the regulatory, ethical, and practical aspects associated with recruitment and retention of research participants.

Dave Jacob

Co-founder & CEO, ThinkGenetic

Dave Jacob is Co-Founder and CEO of ThinkGenetic, a health information company based in Massachusetts., which answers everyday questions about living with genetic conditions and helps shorten the time to diagnose these very rare conditions, was founded, in part, because Dave was born with a rare, connective tissue genetic condition, Cutis Laxa. Despite living with this condition, he has been a successful businessman, entrepreneur, Navy pilot and professional bowler over his varied career. Jacob spent 18 years at EDS, a worldwide systems integration public company before becoming CEO of Data Solutions Corporation, a subsidiary of Data General. Jacob subsequently established technology companies JSI and Davalen before founding ThinkGenetic in 2016.

Karl Kieburtz

Robert J. Joynt Professor in Neurology, University of Rochester Medical Center

Karl Kieburtz is the Robert J. Joynt Professor in Neurology at the University of Rochester Medical Center. He was the founding Director of the Center for Human Experimental Therapeutics (CHET), which conducts learning phase clinical trials and evaluates novel technologies in a wide spectrum of disorders. Dr Kieburtz’s primary clinical and research interests are neurodegenerative diseases affecting the basal ganglia. He was the principal investigator for the NINDS sponsored trials of neuroprotective agents for PD (NET-PD) and served as the chair of the Parkinson Study Group. He completed his MD and MPH degrees at the University of Rochester.

Deborah Kilpatrick

CEO, Evidation Health

Deborah is the Chief Executive Officer of Evidation Health. Prior to this role, she served as the Chief Commercial Officer of genomic diagnostics company CardioDx. Deborah has held multiple leadership roles at Guidant Corporation, including Research Fellow, Director of R&D, and Director of New Ventures in the Vascular Intervention Division. She serves on the Georgia Tech Advisory Board and is a Fellow of the American Institute of Medical and Biological Engineering. Deborah is a co-founder of the MedtechVision Conference, now held annually in Silicon Valley.

Craig H. Lipset

Head of Clinical Innovation, Pfizer

Craig Lipset’s Clinical Innovation team at Pfizer is responsible for impacting clinical research through digital tools, improving patient engagement, and novel collaborations. He serves on the Board of Directors for the Foundation for Sarcoidosis Research, the Board of Directors for the MedStar Health Research Institute, the Operations Committee for TransCelerate BioPharma, and as a Mentor at health tech accelerator Blueprint Health. Craig also serves on the Editorial Board for Therapeutic Innovation & Regulatory Science, and has been listed among the PharmaVOICE most inspiring people in the life sciences, Pharmaceutical Executive’s Emerging Leaders, and AlleyWatch Who’s Who in eHealth.

Jiebo Luo

Professor of Computer Science, University of Rochester

Professor Jiebo Luo joined the University of Rochester in 2011 after a prolific career of over fifteen years at Kodak Research Laboratories. His research spans computer vision, machine learning, data mining, social media, biomedical informatics, and ubiquitous computing. He has published extensively in these fields with 300+ peer-reviewed papers and 90+ granted US patents. He has been involved in numerous technical conferences and served on various editorial boards including the IEEE Transactions on Pattern Analysis and Machine Intelligence, Pattern Recognition, and Journal of Electronic Imaging. He is a Fellow of the SPIE, IEEE, and IAPR. He is a Data Science CoE Distinguished Researcher with the Georgen Institute for Data Science at UR.

Michael O’Brien

President, Clinical Trials Division, AMC Health

Michael O’Brien brings more than 30 years of broad-based C-suite experience to the life sciences and information technology industries. Prior to joining AMC Health, he was the President and CEO of Beardsworth, a Contract Research Organization (CRO) that provides full-service clinical trial support for pharmaceutical, biotechnology and medical device companies. Previously, he held executive level positions in highly innovative life science companies such as CFO and CEO at Biocyte Corporation and CFO at Bionx Implants and Biosyn, Inc. His high-technology experience with Allerion Corporation based him in the US, Paris, and London where he led their healthcare division.

Elektra Papadopoulos

Associate Director of COA Staff, Center for Drug Evaluation & Research, Food & Drug Administration

Elektra Papadopoulos, MD, MPH, serves as the Associate Director of the Clinical Outcome Assessments (COA) Staff in the Office of New Drugs in the Center for Drug Evaluation and Research (CDER). The COA Staff provides consultation to CDER’s Review Divisions as well as other FDA Centers on the development, validation, and interpretation of clinical outcome assessments, including patient-reported outcome instruments, in medical product development. The COA Staff also manages CDER’s Clinical Outcome Assessment Drug Development Tool Qualification Program and participates in other FDA initiatives to promote patient-centered drug development.

Spyros Papapetropoulos

VP & Global Head of Neurodegeration, Movement Disorders & Clinical Research Transformation, TEVA

Spyros Papapetropoulos, a board-certified Neurologist and a Movement Disorders specialist, is a recognized researcher, an experienced biopharmaceutical and healthcare executive and digital health expert. Prior joining TEVA Pharmaceuticals, he held positions of increasing responsibility at Biogen’s Experimental Neurology Unit, Allergan’s Global Medical Affairs and Pfizer’s Neuroscience Research Unit. He has filed multiple INDs and has overseen a wide spectrum of pharmaceutical development programs leading to successful regulatory filings and new product launches. He has led in-licencing efforts and corporate partnerships with profit, non-profit organizations and academic institutions. Spyros is currently co-chairing the International Parkinson’s Disease and Movement Disorders Society’s (IPMDS) Taskforce on Technology and is a member of various US government and non-profit committees on healthcare and biomedical research innovation.

Maria Picone

Founder, TREND Community

Maria Picone is the Founder and President of Formed, Inc, a health-focused technology company located in Philadelphia, Pennsylvania. She founded Formed with her husband, Chris, in 2007. After their daughter was born with Prader-Willi Syndrome, Maria and Chris built TREND Community to give patients and their caregivers a platform to tell their stories and share anecdotal data. TREND Community empowers its users to become citizen scientists and actively participate in the search for their own treatments and cures.

Jane Rhodes - BIOGEN

Jane Rhodes

Senior Director, New Initiatives, Innovation Hub at Biogen

Jane [Relton] Rhodes, PhD, MBA, is Senior Director of New Initiatives in the Value Based Medicine group at Biogen. Dr. Rhodes leads a number of initiatives that employ digital solutions to help transform the care of patients with neurological diseases by improving outcomes and demonstrating value to patients and providers. Dr. Rhodes began her scientific career in the field of neurology drug discovery research, and worked on novel therapies for stroke, MS, ALS, Parkinson’s disease and Alzheimer’s disease.

Kristin Schneeman

Director of Programs, FasterCures

At FasterCures, as director of programs, Kristin Schneeman has primary responsibility for its innovation portfolio of projects and activities, focused on best practices in funding, conduct, and collaboration in medical research. Through initiatives such as The Research Acceleration and Innovation Network (TRAIN) program. Schneeman brings to FasterCures 25 years’ experience in public policy, politics, academia and the media. She served for three years as a senior adviser and policy director to a gubernatorial candidate in Massachusetts, as a policy aide to a U.S. Congressman, and for four years as the front-line manager and chief-of-staff for a senior adviser to Vice President Al Gore. Schneeman began her career as a producer of documentary films, for which she was the recipient of an Emmy Award in 1990.

Ira Shoulson

Director, Program for Regulatory Science & Medicine Georgetown University

Ira Shoulson, MD is Director of the Program for Regulatory Science and Medicine at Georgetown University. Dr. Shoulson founded the Parkinson Study Group and the Huntington Study Group — international academic consortia devoted to research and development of treatments for Parkinson disease, Huntington disease. He was a key investigator in the US-Venezuela Collaborative Huntington Disease Project, which identified the gene responsible for Huntington Disease. He played an instrumental role in the development of 10 new drugs for neurological disorders, including seven for Parkinson disease, two for Huntington disease and one for attention deficit disorder. He was formerly a health policy fellow in the US Senate, president of the American Society for Experimental NeuroTherapeutics, and associate editor of JAMA Neurology. In 2016, he was recipient of the Michael J. Fox Foundation Pritzker Prize, in recognition of his leadership in research and education for Parkinson disease. Dr. Shoulson is principal investigator of the FDA-Georgetown University Collaborating Center of Excellence in Regulatory Science and Innovation, and an elected member of the National Academy of Medicine of the National Academy of Sciences.

Sandra Shpilberg

Founder & CEO, Seeker Health

Sandra Shpilberg is the Founder and Chief Executive Officer of Seeker Health. She is an expert in patient engagement in rare and serious diseases. Prior to founding Seeker Health, Sandra was an executive of BioMarin Pharmaceutical, Inc. where she led commercial launches and product development for therapeutics for rare diseases, and later on at Nora Therapeutics. Her core belief is that “Nothing Happens Without Patients,” which translates into services and products that are completely patient-centric and designed to accelerate innovation in drug development.

Komathi Stem

Founder & CEO, monARC Bionetworks, Inc.

Komathi Stem is the Founder and CEO of monARC Bionetworks. As an entrepreneurial systems thinker, she focuses on sparking an ecosystem change that accelerates discovery and clinical trials through interdisciplinary collaboration and digital technologies. With over 25 years of biopharma experience from Genentech, AstraZeneca and Eli Lilly, she has built and led high impact field and global corporate teams with up to 500 employees across multiple headquarter sites and functions. As a senior executive, she has driven numerous large-scale clinical trial transformations to deliver patient centric solutions.

Wendy White

Board Chairman, Global Genes; Principal, Wendy White Consulting

Wendy White is a thought leader working in rare disease at the intersection of business, advocacy and technology. She founded, grew and transitioned Siren Interactive Corporation to Dohmen Life Science Services as part of a long-term vision to integrate patient-level insights into the drug delivery continuum She spent 5 years on the board of the National Organization of Rare Disorders (NORD), is the chair emeritus for the Healthcare Business Woman’s association and now after 2 years of serving on the Global Genes Board, she has accepted the position as Board Chairman. She is the mother of a child with a rare disorder and publisher and co-author of Uncommon Challenges; Shared Journeys—Stories of Love, Hope, and Community by Rare Disease Caregivers.