Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve U School of Medicine, Cleveland, OH

Dr. Appleby is a neuropsychiatrist with primary clinical and research interests in atypical dementias.  He received a B.A. in biology and philosophy from Goucher College and a M.D. from Georgetown University School of Medicine.  He completed a psychiatry residency and geriatric psychiatry fellowship at The Johns Hopkins Hospital. He is Professor of Neurology, Psychiatry, and Pathology at Case Western Reserve University.  He serves as the Director of the National Prion Disease Pathology Surveillance Center, Medical Director of the CJD Foundation, and Chair of the Cleveland Alzheimer’s Association Chapter’s Professional Advisory Board.  He has several leadership roles in the Cleveland Alzheimer’s Disease Research Center, including leader of its Clinical Core and Co-Leader of its Neuropathology Core.

Project/Product Manager, Research and Development Division, International Clinical Development Department, Nobelpharma Co., Ltd., Tôkyô, Japan

Kiyoshi Arita, MSc has about 30 years of experience for the clinical research/development at Japanese Pharmaceutical company (including subsidiary located in London and in New Jersey) and at joint venture company in Quebec.

He worked for global clinical development of Phase I to III studies with several therapeutic area, such as CNS, renal disease and vaccine. Currently he has been working at Nobelpharma Co., Inc. since 2022 as a Project Manager for project targeting with Prion Disease.

Tissue Lab Scientist, National Prion Disease Pathology Surveillance Center

Holds a bachelor's degree in Biological Sciences from the Federal University of Pernambuco (2009), a master's degree in Biology Applied to Health from the Federal University of Pernambuco (2011), and a Ph.D. in Biology Applied to Health from the Federal University of Pernambuco (2016). Collaborated on the project: "Brazilian cervids and the prion disease CWD (Chronic Wasting Disease): investigation of genetic polymorphisms associated with susceptibility", developed at the Vitória Academic Center of UFPE. Create the dcjBRASIL family group to support Brazilian's families affected by CJD. Currently works at National Prion Disease Pathology Surveillance Center. 

Professor and Michael J. Homer Chair in Neurology at the University of California, San Francisco

Dr. Michael Geschwind is a Professor of Neurology at the University of California, San Francisco. His primary areas of clinical research are in rapidly progressive dementias (RPDs), including prion diseases and antibody-mediated encephalopathies, Huntington’s disease, spinocerebellar ataxias and atypical parkinsonian disorders.

He completed his M.D. and Ph.D. in neuroscience at the Albert Einstein College of Medicine, his internal medicine internship at UCLA, neurology residency at the Johns Hopkins School of Medicine and fellowship in neurobehavior at the University of California, San Francisco (UCSF) Medical Center, Memory and Aging Center, where he stayed on as faculty.

He and his team run an active clinical research program in prion disorders, focusing on both sporadic and genetic forms. Dr. Geschwind and his team ran the first ever treatment trial for sporadic Jakob-Creutzfeldt disease (sJCD) in the United States. Over the past 16 years, he has helped recruit one of the largest clinical cohorts in the United States of patients with prion disease, as well as patients with other non-prion RPDs.  His team has been following more than 100 families with genetic prion disease. Dr. Geschwind also is involved clinically in caring for patients with mild cognitive impairment, Alzheimer’s disease, frontotemporal dementia, Huntington’s disease, CADASIL, atypical Parkinsonian dementias and various neurogenetic disorders.

Administrative Lead, National Prion Disease Pathology Surveillance Center

With nearly two decades of administrative experience in prion research and surveillance, I offer comprehensive support across a broad spectrum of complex research and operational functions. I currently manage the surveillance and research operations of the National Prion Disease Pathology Surveillance Center (NPDPSC), with additional responsibilities in data analysis and oversight of key initiatives, including the Teleneurology Assessment Program for CJD (TAPCJD) and the Cleveland Alzheimer’s Disease Research Center.

Chair, CJD Support Network, UK

Professor Richard Knight received his BA degree in philosophy, politics, and economics at Oxford
University in 1972, his medical degree in 1977, his postgraduate medical qualification in 1980 and
became a Fellow of the Royal College of Physicians of Edinburgh in 1993.

Professor Knight an Emeritus Professor in the University of Edinburgh and an Honorary Clinical Neurologist at the Royal Infirmary of Edinburgh, NHS Lothian University Hospitals Trust. He worked in the UK National CJD Research and Surveillance Unit until its closure in March 2025. Since then he has run a UK National CJD Diagnostic Advisory Service. He is currently the Chair of the UK National CJD Support Network, a Director of the CJD International Support Alliance, an International Champion of the Australian CJD Support Group, and a Member of the Scientific Advisory Committee of the USA CJD Foundation.

Professor Knight has authored and co-authored many CJD related papers related to sporadic, variant,
genetic and iatrogenic forms of illness. His main research interests have centered on epidemiology,
clinical features and diagnosis of prion disease.

Autopsy Specialist, National Prion Disease Pathology Surveillance Center  

Meghan Lewis is an autopsy coordinator at the National Prion Disease Pathology Surveillance Center, where she has been supporting families for nearly eight years. She also coordinates autopsies for the Cleveland Alzheimer’s Disease Research Center. With a master’s degree in clinical psychology, Meghan brings both clinical insight and compassion to her work, helping guide families through the often difficult and emotional process of coordinating an autopsy.

Meghan is deeply committed to making sure families feel supported, informed, and cared for throughout the process. She is honored to be part of teams dedicated not only to advancing research on neurodegenerative diseases, but also to walking alongside families with empathy and understanding. Outside of work, she enjoys spending time with her two kids, music, and reading.

Senior Epidemiologist and Deputy Chief of the Prion and Public Health Office at the United States Centers for Disease Control and Prevention (CDC)

Ryan Maddox is a senior epidemiologist and Deputy Chief of the Prion and Public Health Office at the United States Centers for Disease Control and Prevention (CDC). In this role, he coordinates national surveillance of human prion diseases such as Creutzfeldt-Jakob disease. Dr. Maddox received his Bachelor of Science degree from Auburn University and earned his Master of Public Health (epidemiology) and PhD degrees from Emory University. He is the author or co-author of many publications covering various aspects of prion diseases in the United States.

Professor of Neurology, Director, Center for Comprehensive Care and Research on Memory Disorders, University of Chicago

Dr. Mastrianni earned his Ph.D. in pharmacology at the University of North Carolina and his M.D. at McGill University. He completed his internship and residency training in neurology at the University of Pennsylvania. After his clinical training, he returned to the lab to carry out a Howard Hughes Medical Institute supported postdoctoral research fellowship at UCSF, where he studied the molecular genetics of prion disease in the laboratory of Dr. Stanley Prusiner.

Currently, he is a Professor of Neurology and Director of the Center for Comprehensive Care and Research on Memory Disorders at the University of Chicago and Director of the Behavioral Neurology and Neuropsychiatry program. He and his multidisciplinary clinical team diagnose and treat a variety of cognitive disorders. Of special clinical focus are the prion diseases, which are neurodegenerative diseases that are also transmissible. These rare, but devastating diseases are also the target of Dr. Mastrianni’s research program, which ranges from genotype-phenotype correlations of human disease to molecular studies designed to better understand the nature of prion propagation with a goal to develop therapies for prion disease. Dr. Mastrianni’s studies have led to the recognition of several genetic variants of prion disease, and the first description of Sporadic Fatal Insomnia, a rare subtype of prion disease that helped to establish the importance of the conformational subtype of misfolded prion protein as the driver of the clinical phenotype of disease.

He has a robust record of publications and research funding and is the recipient of several honors and awards, most notably the Frederic A. Gibbs Discovery Award for Scientific Achievement from the Brain Research Foundation. He has served as a consultant to the FDA, the Alzheimer’s Association, the ECRI institute, and the Federal Trade Commission, among many others. Finally, Dr. Mastrianni is a committed teacher to undergraduate, graduate, and medical students, in addition to residents and fellows from a variety of specialties.

Elizabeth McNeil, MD, MSc, Vice President and Global Clinical Program Lead in Neurology, Sangamo Therapeutics, Inc.

Dr. Elizabeth McNeil has worked in private practice, government, and industry.  She worked at the US Food and Drug Administration (FDA) for just under a decade. While there she served as a clinical reviewer before she became a team leader in the Division of Neurological Drug Products. At the FDA, she worked extensively on a full range of products, including new molecular entities, new formulations of approved drug products, drug-drug combinations, and drug-device combinations. She developed new scientific, clinical, and regulatory standards for the development of certain drug classes and developed initiatives which resulted in standardization and clarification of terminology used in defining claims and endpoints, as well as in increased standardization, precision, and sensitivity in reporting safety and efficacy data.  

She left the FDA to join the NIH National Institute of Neurological Disorders and Stroke (NINDS) where she was responsible for the NeuroNext consortium (www.neuronext.org) including, among other things, devising the necessary strategy to allow industry-government partnerships on early neurological trials. She was promoted from Medical Officer to serve as Interim Director of the Office of Clinical Research at NINDS, with responsibility for all extramural clinical neurology research funded in the USA.   

She left the US government in 2015 to work in industry. She was a part of the SPINRAZA clinical team at Biogen and later the clinical team lead for SKYSONA at bluebird bio.   She is currently Vice President and Global Clinical Program Lead/Neurology at Sangamo Therapeutics.

She did her undergraduate work at The University of Chicago.  She subsequently graduated from Columbia University, College of Physicians and Surgeons. She trained in pediatrics as Texas Children’s Hospital before training in both neurology and neuro-oncology at Children’s Hospital of Philadelphia. After completion of fellowship training, she was in private practice before going to a second fellowship in genetic epidemiology at the National Institutes of Health. She holds a Master of Science in Epidemiology from the London School of Hygiene and Tropical Medicine in the UK. 

Director, Prion Therapeutic Science, Broad Institute of MIT and Harvard,Cambridge, MA

Vice President of Clinical Development, Ionis Pharmaceuticals

Anne Smith is Vice President of Clinical Development at Ionis Pharmaceuticals where she has focused on innovative treatments for neurological conditions for over a decade.  In this role, she leads the team discovering and testing investigational treatments for prion disease.   Dr. Smith received her bachelor’s degree from Villanova University and her PhD degree from North Carolina State University.  

Certified Dementia Practitioner, Certified Grief Educator, The Memory Center, University of Chicago Medicine, Chicago, IL

Tessa brings over 20 years working with diverse populations in the nonprofit and medical sectors, from youth and parents, to women in maternal health, and older adults, doing her best to listen first before giving care. Currently approaching her 10th year at UChicago Medicine, she is interested in providing patients, care partners, and families — across intergenerational lines and identities — with personalized access to resources, short- and long-term care planning, and exploring creative strategies together for increased quality of life.  Tessa primarily supports all of those that come through The Memory Center, with Alzheimer’s Disease and other related dementias (ADRDs). She also provides support via consultation for all of the outpatient neurology and neurosurgery clinics, which includes patients with ALS, epilepsy, stroke, and more.

On her off time, Tessa serves as a co-founding board member at Lorenzo’s House, a local nonprofit focusing on younger onset dementia – those diagnosed under age 65, with children as young as 3 yrs old to age 35+. She helps to design their support programs and facilitate the youth and adult care partner sessions and grief spaces worldwide, currently reaching 49 states and 17 countries. As we know, many of those with CJD are often coming from younger families, and Tessa is all too familiar with its uniquely complex challenges. 

As a graduate student recipient of the Albert T. Schweitzer Fellowship, she focused on bringing grief and loss support to local communities, along with cultural humility and compassionate care to medical settings, and continues to do so through speaking engagements for medical professionals, graduate students, and community members.  

Tessa is co-founder and medical sector co-lead for Dementia Friendly Hyde Park, and is a board member with the Society for Social Work Leadership in Healthcare. She works behind the scenes of the innovative and nationally award-winning programs at The Memory Center, holds a certification from the National Council of Certified Dementia Practitioners, and is a Certified Grief Educator. Tessa completed her B.A. in Sociology at The University of Notre Dame and a masters in clinical social work at The University of Chicago School of Social Service Administration.

Vice President of Translational Sciences, Gate Bioscience

Nina Oberbeck, PhD, is the Vice President of Translational Sciences at Gate Bioscience, where she leads the Prion program. Gate Bioscience have been collaborating with the Vallabh Minikel Lab since 2021.

Dr. Oberbeck earned her Ph.D. in Molecular Biology from the MRC Laboratory of Molecular Biology, University of Cambridge, where she investigated DNA repair mechanisms under the mentorship of Dr. K.J. Patel, FRS FMedSci. She also holds an MA (Hons) and MSci in Natural Sciences from Magdalene College, University of Cambridge. She completed her postdoctoral training at Genentech Inc. under Dr. Vishva Dixit, focusing on the signaling pathways that regulate epidermal stem cell differentiation. She has authored several first-author publications in leading scientific journals, including Nature and Molecular Cell.

Dr. Oberbeck has presented Gate’s work on prion disease internationally at the Prion 2024 meeting in Nanchang, China, and the 14 th Annual National CJD Conference in Melbourne, Australia, in 2023.

Director, Prion Research Center, Colorado State University, Fort Collins, CO, U.S.A.

Telling Laboratory is one of only a handful of groups with the resources and expertise in whole animal, transgenic, cell biological, biochemical, molecular genetic, and in vitro approaches to studying prion disease, and they are widely considered to be among the leaders in the field. Dr. Telling has been recognized for his studies on human prions, the molecular basis of the species barrier, prion strains and their zoonotic potential, and chronic wasting disease (CWD) of cervids. Following baccalaureate and Masters’ training at Oxford University and Doctoral training at Carnegie Mellon University respectively, his involvement in prion disease research began in the early 1990’s as a postdoctoral trainee with Nobel Laureate Stanley Prusiner. Dr. Telling subsequently developed a well-funded and internationally acclaimed independent career. He was recruited to Imperial College, London by the Medical Research Council (MRC) at the height of the BSE/CJD crisis, to establish a research group in the newly created MRC Prion Unit. Following a subsequent successful tenure at the Sanders Brown Center on Aging at the University of Kentucky Medical Center, he was recruited to establish and direct the Prion Research Center (PRC) at Colorado State University in July 2011. In establishing the PRC, they recruited members with diverse expertise including protein chemistry, molecular biology, immunology, infectious diseases, mammalian and yeast cell biology, genetics, mouse transgenesis, neurodegeneration, epidemiology, and public and animal health. The PRC is well placed to study CWD because of its local origin and regional importance. The publication output of his lab has been consistent, and has exerted a powerful and sustained influence on the field. As an independent investigator, he has received uninterrupted funding from the National Institutes of Health since 2000. Additional research funding has been secured through the Departments of Defense and Agriculture, as well as other UK and Canadian funding agencies. He has published over 100 peer-reviewed research articles in leading research journals including Science, PNAS and Cell, as well as 13 book chapters and over 140 conference abstracts. His expertise provides him the opportunity to serve the broader scientific community in numerous settings. His ability to liaise and collaborate with the prion community is also significant. In combination with skills and perspectives provided by Telling Laboratory's talented collaborators, Telling Laboratory is in a unique position to investigate the molecular events underlying prion propagation, species barriers and strains, which remain the overarching goals of Dr. Telling's research program.

Associate Professor, Department of Biochemistry, University of Toronto, Toronto, Ontario, Canada

Dr. Watts obtained his PhD in Laboratory Medicine and Pathobiology from the University of Toronto and then conducted postdoctoral research in the lab of Stanley Prusiner at the University of California San Francisco. He is currently a Principal Investigator at the Tanz Centre for Research in Neurodegenerative Diseases, an Associate Professor within the Department of Biochemistry at the University of Toronto, and is the Canada Research Chair in Protein Misfolding Disorders. His research interests include studying the role of protein aggregate strains in Alzheimer’s disease and Parkinson’s disease as well as exploiting the unique properties of the bank vole prion protein to understand how prions form spontaneously in the brain.

IKERBasque Research Professor, Center for Cooperative Research in Biosciences (CIC bioGUNE), Basque Research and Technology Alliance (BRTA), Derio, Spain

Grant Title: "Exploring the efficacy of dominant negative protein-based gene therapy for different prion diseases: in vivo proof-of-concept study"

Professor Dr. Joaquín Castilla is a senior investigator currently working at CIC bioGUNE, with over 25 years of experience in prion research. He has worked at several prestigious research institutions, including the Serono Research Institute in Switzerland, the University of Texas Medical Branch, and Scripps-Florida, where he led an independent research group. Dr. Castilla's research focuses on prion propagation both in vitro and in vivo, exploring strain and species barriers. His notable achievements include developing sensitive prion detection methods, generating prion infectivity in vitro, detecting prions in blood, and creating diverse recombinant prions, which have provided invaluable insights into the fundamental aspects of the prion field. He has extensive experience collaborating on international projects, has supervised 20 doctoral theses, and has published over 120 peer-reviewed articles in top journals, significantly contributing to our understanding of the molecular mechanisms underlying prion propagation.

*Scheduled to speak remotely

Grant Title: "Investigation of Glycoprotein Nonmetastatic Melanoma protein B (GPNMB) as potential therapeutic target in Prion Diseases"

Dr. Elena De Cecco earned her PhD in Functional and Structural Genomics from the International School for Advanced Studies (SISSA) in Trieste, Italy, where she began investigating the molecular basis of neurodegeneration. She is currently a senior researcher in the laboratory of Prof. Adriano Aguzzi at the University of Zurich, where she employs CRISPR-based genetic tools, cellular models, and protein biochemistry to study the mechanisms of prion and α-synuclein propagation. DR. De Cecco’s work focuses on the molecular mechanisms governing the intercellular transfer and replication of prions and α-synuclein aggregates, with the goal of uncovering novel insights into the spread of neurodegenerative pathologies.

Grant Title: "Generating cerebral organoids from donors with sporadic Creutzfeldt-Jakob Disease"

Dr. Arielle Hay’s captivation with neuroinvasive diseases began when she learned about prion diseases as a neuroscience major at Carthage College. After receiving her undergraduate degree, she did research for a year at National Institutes of Health’s Rocky Mountain Laboratories (RML) studying Zika virus and how it interacts with the immune system. She then began her graduate research at Colorado State University (CSU) to investigate how prions induce neuroinflammation and how this could be a therapeutic target. She worked under the mentorship of Dr. Mark Zabel and Dr. Julie Moreno and was funded by the National Science Foundation’s Graduate Research Fellowship.  She was awarded her PhD in Microbiology from CSU in the spring of 2023. In the fall of 2023, she returned to RML as a postdoctoral researcher in the laboratory of Dr. Cathryn Haigh to continue studying the cellular response to human prion diseases.

Grant Title: “Development of ADAM8-based Gene Therapy for CJD”

Dr. Kong earned his B.S. and M.S degrees in Biochemistry from Nanjing University in 1987 and 1990, respectively, and he completed his Ph.D. degree in Molecular Virology at the University of Massachusetts in 1996.  He received his postdoctoral training in Molecular Immunology at Yale University 1996-2000, after which he joined the Department of Pathology at Case Western Reserve University as an assistant professor. Dr. Kong is currently a tenured Associate Professor of Pathology and Neurology and Associate Director of National Prion Disease Pathology Surveillance Center at the School of Medicine, Case Western Reserve University, Cleveland, OH 44106, USA.

Dr. Kong’s research interests center on prion diseases and gene therapies, including public health risks of animal prions, animal modeling and characterization of novel human prion diseases, skin prions and early diagnosis of prion diseases, etiology of sporadic Creutzfeldt-Jakob disease (CJD), processing of the normal cellular prion protein, and gene therapy for prion disease, Alzheimer’s disease, and other neurodegenerative diseases.  He is also working on biomarkers for Parkinson’s disease.  He has served on the editorial boards of a few journals, including Frontiers in Neuroscience, Frontiers in Aging Neuroscience, and Annals of Translational Medicine.  He has served on multiple review panels for grant agencies and private foundations, such as NIH, USDA, MRC (UK), NC3Rs panel (UK), Alberta Prion Research Institute (Canada), Alberta Innovates (Canada), Federal Ministry for Education and Research (BMBF)(Germany), Alzheimer’s Association, and Alzheimer’s Society (UK).

Detailed bios:  https://case.edu/medicine/pathology/faculty/qingzhong-kong

Detailed publication list (Google Scholar): https://scholar.google.com/citations?user=Q2f5918AAAAJ&hl=en&citsig=AMD79or9kKm4k4XAr2sc9CLMxL6bpd-Ghw

Grant Title: “Understanding the molecular mechanism of spontaneous prion emergence in knock-in mouse models”

Dr. Surabhi Mehra earned her PhD in Biotechnology from the Indian Institute of Technology (IIT Bombay), India, specializing in protein aggregation and amyloid formation, with a primary focus on α-synuclein and Parkinson's disease. In 2021, Dr. Mehra joined as a postdoctoral fel-low at the Tanz Centre for Research in Neurodegenerative Disorders, University of Toronto, Canada expanding her expertise in the prion field. Currently, her research is focused on under-standing the spontaneous formation of prions in the brain by utilizing mouse models designed to mimic genetic prion diseases. The research aims to gain insights that may pave the way for developing targeted drugs aimed at impeding the progression of prion diseases.

*Scheduled to speak remotely

Grant Title: “Bridging the pre-clinical gap for a small brain-penetrant molecule that reduces PrPC levels”

Dr. Gerold Schmitt-Ulms studied biochemistry and genetics at the University of Hamburg, Germany. He obtained his PhD at the Max-Planck Unit for Structural Molecular Biology, Hamburg, investigating mo-lecular interactions in Alzheimer’s disease under supervision of Dr. Eckhard Mandelkow. In 1999, he joined the laboratory of Dr. Stanley Prusiner, University of California San Francisco, to complement his training with the study of prion diseases. Since 2003, he has been a graduate faculty member within the Department of Laboratory Medicine & Pathobiology, University of Toronto, working at the Tanz Centre for Research in Neurodegenerative Diseases. His research focuses on Alzheimer’s disease, prion disor-ders and related dementias. More specifically, his group studies how disease perturbs the physiological function and molecular interactions of proteins known to cause inherited forms of these dementias. The overarching objective of this work is to derive mechanism-based early diagnostics and disease interventions. 

*Scheduled to speak remotely

Grant Title: “Validation of a non-invasive diagnostic test for prion diseases using tear fluid”

Matthias Schmitz received his PhD at the Max-Planck Institute for experimental Medicine in Goettingen. His postdoctoral training at the University Medical Center of Goettingen (Ger-many) started in 2007 before he finished his habilitation in 2019.
During this time, Matthias Schmitz published extensively in the field of prion diseases and other neurodegenerative diseases. He made substantial contributions to biomarker research in cerebrospinal fluid and other peripheral body fluids. His current work focuses on the devel-opment of a reliable and accurate test system for prion disease diagnostic, prognosis as well as in monitoring disease progression. He plans to optimize the prion aggregation assay, RT-QuIC, for the detection of pathological prions in tear fluid.

President and Executive Director, CJD Foundation

Debbie Yobs joined the CJD Foundation (CJDF) in 2014 and became President and Executive Director in January 2015.  Previously, she was a member of the CJD Foundation Board of Directors and co-Chair of the CJD Foundation Fundraising Committee.

Today, Debbie directs the daily activities of the CJD Foundation, working with staff and volunteers on programs including advocacy, awareness, medical education, annual conference, and research grant management.  She assists families through the CJDF HelpLine and conducts support groups and family workshops.  She has also continued to passionately support the fundraising efforts of the CJD Foundation.

Through presentations at the international Prion scientific conferences, Debbie has represented the families of the CJD Foundation and drawn the attention of hundreds of scientists to the CJDF’s research grant program.  She is a member of the CJD International Support Alliance.  In addition, she is a member of the National Prion Disease Pathology Surveillance Center (NPDPSC) Advisory Board.

Before joining the CJD Foundation, Debbie served as Marketing Director at leading professional services firms.  She earned a bachelor’s degree in communications from Miami University, Oxford, Ohio, and completed professional development courses at New York University and University of Michigan.  She also completed a course in Professional Patient Advocacy in Life Sciences (PPALS).

Program Director, CJD Foundation

As Program Director of the CJD Foundation, Lori leads the administrative operations of the Akron office, coordinating day-to-day activities. She supports families through the HelpLine, facilitates family workshops, organizes grand rounds through the CJD Foundation Medical Education Program, and supports the advocacy program and funeral education program. Lori co-manages the CJD Foundation annual conference, including the agenda, venue, registration, media, and logistics processes.  She also works with families on family fundraisers, Strides for CJD, and research grant programs.

Lori has represented the CJD Foundation at the International Prion 2012 (Netherlands), Prion 2015 (Colorado), Prion 2017 (Edinburgh), and Prion 2018 (Santiago de Compostela) conferences.  She is a member of the CJD International Support Alliance, which collaborates to refer families to experts and resources in the member countries, and to raise awareness worldwide.

Lori joined the Creutzfeldt-Jakob Disease Foundation (CJDF) in 2010.  Previously, she was Program Director for Older Adults at the Shaw JCC in Akron, Ohio. Before moving to Akron, Lori worked at Carnegie Mellon University in her hometown of Pittsburgh.