Sean Ekins, Ph.D., D.Sc. Founder, Chief Executive Officer
Dr. Ekins graduated from the University of Aberdeen; receiving his M.Sc., Ph.D. and D.Sc in Clinical Pharmacology. Sean was a postdoctoral fellow at Lilly Research Laboratories. He has worked as a senior scientist at Pfizer and Lilly Research Laboratories, respectively and as Associate Director of Computational Drug Discovery at Concurrent Pharmaceuticals, Inc (now Allergan) and Vice President of Computational Biology at GeneGo (now Thomson Reuters). He advises several rare disease foundations on their science. He is also CEO and Co-Founder at Phoenix Nest and Senior Consultant for Collaborations in Chemistry. In addition he has Adjunct faculty positions at the University of Maryland, Rutgers and UNC Chapel Hill. Sean has authored or co-authored ~270 peer reviewed scientific papers and book chapters as well as edited/ co-edited four books. He has received 13 SBIR or STTR and 1 R21 grant as PI and consults widely with academia and industry.
Alex Clark Ph.D., Chief Technology Officer
Dr. Clark is the founder of Molecular Materials Informatics, Inc. He is formally trained as a synthetic organometallic chemist, and has been building computational chemistry software for two decades. In recent years he has specialized in cheminformatics products, with an emphasis on usability by chemists, advanced algorithms, visualization techniques, and data quality. These techniques are conveniently demonstrated in the form of mobile apps, such as PolyPharma, Approved Drugs, Open Drug Discovery Teams and ChemSpider Mobile.
Maggie A.Z. Hupcey, Ph.D., Vice president Strategy and Operations
Dr. Hupcey graduated from Cornell University with a PhD in Chemistry and has since had positions in strategy and project management at companies across medical devices, drug discovery, and vaccines. She was most recently was Senior Manager, Exploratory Development at GSK where she was accountable for the technical development of three Phase 1 programs. Dr. Hupcey brings nearly 20 years of strategic and operational experience to the company, has several patents as well as contributed to editing a book on collaborations.
Mary Lingerfelt Ph.D., Postdoctoral Fellow
Dr. Lingerfelt graduated from the University of North Carolina Greensboro with a Ph.D. in Medicinal Biochemistry, specializing in G-protein coupled receptor modeling and drug design. This degree allowed her to integrate knowledge from three separate disciplines in a collaboration that included research efforts from labs spanning the East coast. In addition to her education, Dr. Lingerfelt has more than ten years’ worth of experience in teaching Chemistry and has worked as a pharmaceutical drug sales representative.
KIMBERLEY M. ZORN M.S., SCIENTIST
Kim graduated from the University of North Carolina at Greensboro in 2013 with a B.S. in Biology, and soon after joined the Infectious Diseases Department at LabCorp quantifying HIV, HBC, and HCV RNA in human samples. She graduated from the University of North Carolina at Greensboro again in 2016 with an M.S. in Biochemistry; her thesis focused on constructing an in silico model mimicking a synaptic plasma membrane in lipid composition.
Scientific Advisory Board
Joel S. Freundlich Ph.D.
Dr. Freundlich is an associate professor of Pharmacology & Physiology and Medicine at Rutgers University–New Jersey Medical School. He is a faculty member of the Center for Emerging and Reemerging Pathogens. Prior to his return to academic research in 2006, he spent eight years in the pharmaceutical industry as a medicinal chemist. His undergraduate and master’s degree training were in chemical engineering at Cornell University as a McMullen Dean’s Scholar. He received his doctorate in organic chemistry from the Massachusetts Institute of Technology under the tutelage of 2005 Nobel Prize in Chemistry awardee Richard Schrock. An overarching goal of his current research is the discovery of small molecules that modulate novel biological targets in Mycobacetrium tuberculosis – the causative agent of tuberculosis. To accomplish their aims, his lab typically employs computational, chemical, and biological techniques. His laboratory is funded by the National Institutes of Health.
Nancy S. Connell Ph.D.
Dr. Connell is Professor in the Division of Infectious Disease in the Department of Medicine at Rutgers New Jersey Medical School (RNJMS) and the Rutgers Biomedical Health Sciences. A Harvard University Ph.D. in Microbiology, Dr. Connell’s major research focus is antibacetrial drug discovery in respiratory pathogens such as M. tuberculosis and B. anthracis. She is Director of the Biosafety Level Three (BSLIII) Facility of RNJMS’s Center for the Study of Emerging and Re-emerging Pathogens and chairs the University’s Institutional Biosafety Committee. Dr. Connell has been continuously funded by the NIH and other agencies since 1993 and serves on numerous NIH study sections and review panels. She has served on a number of committees of the National Academy of Sciences, e.g., the Committee on Advances in Technology and the Prevention of their Application to Next Generation Biowarfare Agents (2004), Trends in Science and Technology Relevant to the Biological Weapons Convention; an International Workshop (2010), and the Committee to Review the Scientific Approaches used in the FBI's Investigation of the 2001 Bacillus anthracis Mailings (2011). Current work is with The National Academies of Sciences “Education Institute on Responsible Science”, held in Jordan (2012), Malaysia (2013) and Trieste (2014).
Ethan O. Perlstein Ph.D.
Dr. Perlstein is the Founder and CEO of PerlsteinLab, heis an aspiring orphan drug discoverer, evolutionary pharmacologist, and indie scientist. Ethan has a Ph.D. in molecular and cell biology from Harvard University, and was a Lewis-Sigler Fellow at Princeton University.
Rod Cole Ph.D.
Dr. Cole is Principal at Blue Collar Scientific. He is a senior scientific leader with over 20 years of experience in Pharma/Biotech (Pfizer, AstraZeneca, Abbott, Millenium). He has extensive experience in multiple therapeutic areas including infectious disease, oncology, immunology and inflammation. He is a recognized leader in analytical chemistry, purification, pharmacokinetics, and bioanalysis with a sound track record of achievement in discovery and preclinical development.
Peter L. Ginsberg M.B.A.
Peter Ginsberg is Vice President, Business Development at Biodelivery Sciences International, Inc. Previously he was Senior Director, business development at United Therapeutics. Before that he was at the NC Biotechnology Center as vice president of Business & Technology Development. In this role, he lead the Center’s investments in emerging life science companies, including animal health and agricultural biotech companies. Previously, Ginsberg headed business development and strategic planning for SurModics, a publicly traded and profitable leader in the field of drug delivery, where he led the acquisition of two companies and was responsible for the company’s investment portfolio. Ginsberg also spent six years as an institutional investor (most recently as head of healthcare equity investments at Deephaven Capital Management) and nine years as a sell-side biotech analyst (most recently as managing director at Piper Jaffray where he was named a Wall Street Journal All-Star). He currently serves on the advisory board of the University of North Carolina at Chapel Hill's Kenan-Flagler’s Applied Investment Management program and as an Entrepreneur Affiliate at Duke University’s Fuqua School of Business. Ginsberg earned an A.B. in Economics from Princeton University and an MBA from the Tuck School of Business at Dartmouth College.
AAron McMurtray MD. Ph.D.
Dr. McMurtray is a board-certified neurologist with a sub-specialty in Behavioral Neurology. Dr. McMurtray earned his medical degree in 2000 at Vanderbilt University and completed neurology residency training at Harbor-UCLA Medical Center, followed by fellowship in Behavioral Neurology and Neuropsychiatry at UCLA/West LA VA Medical Center. After completing fellowship training, Dr. McMurtray joined the faculty at the University of Hawaii where he was awarded an American Academy of Neurology Clinical Research Training Fellowship and completed a Ph.D. degree in Biomedical Sciences. In 2009, Dr. McMurtray was recruited to join the Ventura County Medical Center where he founded and directed a multispecialty Traumatic Brain Injury clinic. Dr. McMurtray also served on the board of the Ventura County Brain Injury Center. In 2012, Dr. McMurtray rejoined Harbor-UCLA Medical Center as director of the Behavioral Neurology clinic and founded a multispecialty Neuro-HIV clinic, where he instructs Neurology residents and conducts clinical research studies. Dr. McMurtray’s primary areas of expertise include: traumatic brain injury, neuro-infectious diseases, and neurodegenerative diseases. He is a member of the American Neurological Association and the American Academy of Neurology (Behavioral Neurology, Neuro-infectious Diseases, and Government Services Sections), he is also an investigator at the Los Angeles BioMedical Research Institute and an assistant clinical professor in the Neurology department of the David Geffen School of Medicine at UCLA. He directs an active clinical research program at the Los Angeles BioMedical Research Institute and his recent publications include clinical studies on Alzheimer’s disease, Parkinson’s disease, neurocysticercosis brain infection, and complications of traumatic brain injury.
Natalie Diaz MD.
Dr. Diaz is a board certified neurologist. She received her medical degree in 2000 from the Royal College of Surgeons in Ireland then completed her neurology residency training at McGaw Medical Center of Northwestern University in Chicago. She completed her training with a two-year subspecialty fellowship in Movement Disorders at UCLA Medical Center. In 2006 Dr. Diaz joined the faculty at Harbor-UCLA Medical Center as a physician specialist and attend to patients in both the inpatient and outpatient settings. Dr. Diaz is director of both the Movement Disorder clinic and the Chemotherapeutic clinic at Harbor UCLA and actively attends in the Neurobehavioral and Neuro-HIV clinics. Dr. Diaz holds the title of Associate Professor at the David Geffen School of Medicine at UCLA and is active in the education of residents and medical students. She is a member of the American Academy of Neurology as well as the International Movement Disorder Society. Her research focus has been in clinical trials as well as collaborative clinical projects in the areas of Parkinson’s disease and other neurodegenerative disease.
Julia Chung MD.
Dr. Chung is a psychiatrist at Harbor-UCLA Medical Center and a Health Sciences Associate Professor in the Department of Psychiatry and Biobehavioral Sciences at The David Geffen School of Medicine at the University of California Los Angeles. She received her BA in Biology and German from The Johns Hopkins University and her MD from the University of Illinois at Chicago School of Medicine. She completed her internship at Harbor-UCLA Medical Center and psychiatric residency training at the University of California Los Angeles Neuropsychiatric Institute. This was followed by a two year fellowship training program in Neurobehavior and Dementia at the University of California Los Angeles Reed Neurological Research Center. She is board certified by the American Board of Psychiatry and Neurology in both psychiatry and psychosomatic medicine. Dr. Chung’s clinical and research interests include dementia and the interface between psychiatric and medical disorders. She has experience in clinical trials and is active in teaching and patient care.
Robert C. Reynolds Ph.D.
Research Professor of Chemistry at the University of Alabama at Birmingham and founder of the RCR Consulting Group, has a BS in chemistry from the University of Virginia and a PhD in organic chemistry from Duke University. Dr. Reynolds has a strong background in grant writing and reviewing and also provides insight and guidance on agency policies and procedures from pre-award proposal preparation to post-award grant and contract management. He has significant experience in the life sciences, particularly relating to drug design and the pharmaceutical industry, as well as personal care products, and his clients have ranged from small and large pharmaceutical and biotechnology companies, large cosmetic and formulation companies, and federal agencies that include DOD and the NIH. Dr. Reynolds has successfully managed relationships with these organizations to secure over $100M in funding for capital improvements, major scientific research programs and establishment of robust contact and chemical screening databases. He is actively involved in several NIH review committees giving him an excellent background and insight into the federal grant system including small and large grant programs (P01, U01, R01, R21/R33 and SBIR and STTR grants). His experiences encompass the full gamut of proposal and project capture and management from establishing an expert team, budgeting, writing and reviewing as well as business analysis and client presentations through scientific and administrative project implementation and execution.
Rare Disease Advisory Board
Jill Wood B.A.
Jill Wood graduated from Oregon State University with a BS in retail management and apparel design. Jill is a rare disease patient advocate as her son Jonah was diagnosed with Sanfilippo syndrome. She co-founded Jonah’s Just Begun (JJB) with her husband in 2010, a non-profit to raise awareness and support those with Sanfilippo. She built a scientific advisory board, created a comprehensive social media strategy and raised funds to support the research into Sanfilippo syndrome. In 2012 she co-founded Phoenix Nest with the aim to develop treatments for Sanfilippo Syndrome. Jill frequently lobbies on Capitol Hill with the RDLA in support of rare disease initiatives. Jill is also a speaker at major conferences where she tells her story from mom to CEO of a rare disease organization.
Lori Sames B.A.
Lori Sames is CEO and Co-Founder Hannah's Hope Fund. She received a Bachelor's degree in economics from St. Michael's College, in VT, in 1992. She worked for IDX Systems Corporation as a computer software installation consultant for healthcare until 1996. She then became a Senior Project Lead for integrated heath care delivery system installations. Before becoming a stay at home mom in 2001, prior to the birth of her second child, Reagan, she lead web-based software installations on wireless networks, in the outpatient setting for Allscripts. She helped with her husband's Pet Lodge businesses from time to time, while caring for her three daughters until her youngest daughter, Hannah, was diagnosed with GAN in March of 2008. From that moment forward her life has been dedicated to a treatment and cure of GAN, and making lasting memories for her family.
Allison Moore B.A.
Allison Moore is Founder and CEO of the Hereditary Neuropathy Foundation (HNF). She founded HNF in 2001 in an effort to improve the quality of life for people with Charcot-Marie-Tooth. She divides her time between her homes in Manhattan and Amagansett, NY, with her husband, Robert, and her two young sons. Moore founded HNF in 2001 after a hospital mishap in which she was treated with medications that exacerbated her CMT symptoms and made her legs weak and imbalanced. Her goal was to create a foundation that would lead to the development of treatments and a cure for CMT and increased awareness so the world would recognize CMT as a household name.
Michele Rhee M.B.A., M.P.H.
Michele Rhee is a rare disease and cancer patient advocate with experience managing strategic programs throughout the drug discovery and development landscape. She is also on the Board of Directors of Costs of Care, a nonprofit that helps patients and their caregivers reduce their medical bills.
Matt Wilsey M.B.A.
Matt Wilsey is President of the Grace Wilsey Foundation. He is an entrepreneur, investor and rare disease hunter.
Sharon King is President of Taylor’s Tale, a 501c3 nonprofit organization, was founded in 2007 by the family and friends of Taylor King of Charlotte, North Carolina, who was diagnosed with infantile Batten disease in 2006 at age 7.
Sarah E. Kucharski B.A., M.A.
Sarah E. Kucharski is a consultant, public speaker and advocate fostering the patient voice in medicine through design thinking for innovation and social media. Her special interests include patient engagement, the patient experience, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, clinical trials and health literacy. She has a B.A. in journalism, a M.A. in liberal studies and a certificate from Columbia University's Narrative Medicine program. She also is CEO/Chairman and Founder of FMD Chat, a nonprofit medical organization, and Coordinator of ePatient Programs for Medicine X at Stanford University. As FMD Chat's leader, she oversees the organization's mission and financial objectives; fundraising; publicity and media relations; domestic and international partnerships; volunteer recruitment and development. For Medicine X, she manages the health care and emerging technology conference's ePatient scholarship program and has served on the ePatient Advisory Board since 2012.
Melissa Hogan J.D.
Melissa Hogan is a lawyer by profession, a writer by passion, and an advocate by necessity. Her blog SavingCase is read in over 100 countries. She also updates on her son Case’s participation in the first clinical trial for cognitive impairment in MPS II. Melissa holds a J.D., magna cum laude, with an emphasis in health law from the University of Pittsburgh School of Law where she served as Executive Editor of the Law Review and graduated Order of the Coif. She is a former law clerk to the now Chief Judge of the U.S. Court of Appeals for the Sixth Circuit and previously practiced as a corporate and securities attorney at a well respected law firm in Nashville, Tennessee. She has also taught legal writing and health care regulatory law. Most recently, she practiced as a management consultant with KermaPartners, advising law firms and legal networks on global strategy. She is also the author of the e-book Calmer: Medical Events with Cognitively Impaired Children (2012) which shares strategies for preventing medical trauma in children with chronic medical conditions. Melissa is a frequent speaker on the topic of rare diseases.
Beau James J.D.
Board of Directors
Sean Ekins Ph.D., D.Sc.
Andrea barry B.A., M.S.
Andrea Barry is the Managing Partner of Eleventh Hour Inc. She has over 20 years of successful leadership and management experience (MDL, Scitegic, Accelrys, Vertical*i and CDD). She has an earned reputation for exceeding rigorous organizational goals and objectives. Pragmatic, focused, and driven: a person recognized for “turning plans into action” while coaching and mentoring others to achieve their best.
Julie Bryant B.Sc.
Julie Bryant is the founder and CEO of Rancho BioSciences. Julie Bryant has over 20 years of experience in the life sciences business. Most recently she helped build GeneGo into a world class player in the systems biology field that was sold to Thomson Reuters in 2010. She was responsible for building the company revenues and had sales, marketing, business development, customer care, application scientists and IT reporting to her. At Thomson Reuters Julie was a VP of Business Development in the life science division and ran an international sales team. Previously she helped build OminiViz a text mining life science company and spun it out of Battelle. Bryant also worked at Genometrix, a high throughput gene expression and genotyping company out of Texas that also built a disease blood repository. At Biosym/Accelrys she built the Asian operations from scratch through a network of distributors and then came back to the headquarters to work in Southern California and helped with the Pharmacopeia integration. Bryant also served on the Board at GeneGo and is a board member, shareholder and helped fund FreedomVoice, a telecommunications and VoIP company out of San Diego. Bryant also helps fund startups such aPriori Beauty Company, Simulscribe and Bimini Pet Health. Bryant earned her science degree in England, has edited a Pathway book and is listed on nutritional patents.
Renée J.G. Arnold, Pharm.D., R.Ph.
Renée JG Arnold completed her undergraduate training at the University of Maryland and received her Doctor of Pharmacy degree from the University of Southern California in Los Angeles. She also completed a one-year post-doctoral residency at University Hospital in San Diego/University of California at San Francisco School of Pharmacy. Dr. Arnold was most recently Principal, IMS Health; President and Co-Founder of Pharmacon International, Inc. Center for Health Outcomes Excellence. Dr. Arnold is currently President & CEO, Arnold Consultancy & Technology LLC, headquartered in New York City, and Practice Lead, HEOR, Quorum Consulting, Inc., based in San Francisco, CA, where she oversees outcomes research and develops affiliated software for pharmaceutical and federal government programs. Her special interest in evidence-based health derives from her research that deals with use of technology to collect and/or model real-world data for use in rational decision-making by healthcare practitioners and policy makers. Dr. Arnold’s academic titles include Adjunct Associate Professor, Master of Public Health program, Department of Preventive Medicine at the Mount Sinai School of Medicine, where she has developed and teaches the pharmacoeconomics coursework. She is also Full Adjunct Professor at Long Island University College of Pharmacy and Health Sciences. Dr. Arnold is a founding member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and is an author/co-author of numerous articles and book chapters in the areas of pharmacology, pharmacoeconomics and cost containment strategies.
James H. Wikel, B.S., M.S.
James H. Wikel is currently the Chief Chemistry Officer of Apex Therapeutics, Inc., Indianapolis, and Founder of Pisces Therapeutics, LLC., Rockville, MD. He is also an Adjunct Professor at the Indiana University School of Medicine, Department of Pediatrics. Prior to this he was Chief Technology Officer of Coalesix Inc., Cambridge, MA. He retired in 2004 from Eli Lilly & Company as head of the Department of Structural and Computational Sciences of The Lilly Research Laboratories. He has been actively engaged in pharmaceutical research for over 40 years as both a laboratory scientist and as a scientific manager, and has 41 peer-reviewed scientific publications and 50 issued U.S. Patents. The subject matter included in these patents and publications describe 4 molecules that underwent clinical evaluation as drug candidates and one successfully marketed agricultural product. Mr. Wikel has a B.S. and M.S. degree in chemistry from Marshall University in WV.