Director, National Prion Disease Pathology Surveillance Center (NPDPSC)

Brian Appleby, MD, is a neuropsychiatrist who treats and researches cognitive disorders. His clinical and research interests include prion diseases (e.g., Creutzfeldt-Jakob disease), frontotemporal lobar degeneration, and young-onset dementias. 

Dr. Appleby received a B.A. in biology and philosophy from Goucher College and an M.D. from Georgetown University School of Medicine.  He completed a psychiatry residency at The Johns Hopkins Hospital, where he also completed a geriatric psychiatry fellowship. 

Dr. Appleby is professor of neurology, psychiatry, and pathology at Case Western Reserve University and University Hospitals Cleveland Medical Center.  He is Director of the National Prion Disease Pathology Surveillance Center Director and Medical Director of the Creutzfeldt-Jakob Disease (CJD) Foundation. He is also chair of the Cleveland Chapter Alzheimer's Association Professional Advisory Board.  He is Leader of the Cleveland Alzheimer’s Disease Research Center’s Clinical Core and Co-Leader of its Neuropathology Core. 

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.

Medical Director, CJD Support Network, U.K.

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 is a Clinical Neurologist working in the UK National CJD Research & Surveillance Unit
and is a Professorial Fellow in Clinical Neurology at the Centre for Clinical Brain Sciences, University of
Edinburgh. He has had a long involvement with CJD lay and charity organizations; currently being Chair
of the UK National CJD Support Network Management Committee and an invited Friend and Advisor to
the International CJD Alliance.

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.

Scientist, Broad Institute

Sonia Vallabh co-leads the initiative to develop preventive drugs for prion disease at the Broad Institute. She comes to this work with a personal mission. In 2010, Vallabh watched her 52-year-old mother die of a rapid, mysterious, undiagnosed dementia. One year later, Vallabh learned that her mother’s disease had been genetic prion disease, and that she herself was at risk. Vallabh underwent predictive genetic testing and learned that she had inherited the causal mutation, placing her at very high risk of developing the same disease. There was no prevention, treatment, or cure available. Vallabh quit her previous career in law and consulting, and, together with her husband, Eric Minikel, re-trained as a scientist to devote her life to finding a way to stop her disease before it starts.

At the Broad, Vallabh is focused on developing preventive drugs for prion disease. Lowering of prion protein (PrP) is a genetically well-validated strategy for delaying the onset of prion disease, and it lends itself to measurement of PrP as a biomarker available before the disease process has begun. Vallabh is working on the discovery and preclinical development of PrP-lowering drugs, credentialing of PrP in cerebrospinal fluid as a pharmacodynamic biomarker for such drugs, and establishment of a clinical pathway for preventive drug development. She co-leads a natural history study at Massachusetts General Hospital devoted to the assessment of fluid biomarkers in individuals at risk for genetic prion disease, and helped to launch the Prion Registry to promote and enable research participation in her community.

Vallabh holds a B.A. from Swarthmore College, a J.D. from Harvard Law School, and a Ph.D. in Biological and Biomedical Sciences from Harvard University. She trained in Stuart Schreiber’s laboratory at the Broad. In 2016, she served as a patient representative in the White House Precision Medicine Initiative. Her story has been told in The New Yorker, NPR, and WIRED.

Associate Professor, Department of Biochemistry, University of Toronto

Dr. Watts obtained his BSc in Biochemistry from the University of Western Ontario in 2003.  His graduate studies were conducted in the lab of Dr. David Westaway at the University of Toronto.  His graduate work involved the first characterization of the novel prion protein family member Shadoo. After receiving his PhD in 2008 he pursued postdoctoral studies in the lab of Nobel Laureate Dr. Stanley Prusiner at the University of California San Francisco. Postdoctoral work focused on developing new transgenic mouse models of prion disease as well as exploring the prion-like properties of Aβ and α-synuclein, which are implicated in the pathobiology of Alzheimer’s disease and Parkinson’s disease, respectively. In 2014 Dr. Watts started his own lab at the Tanz Centre for Research in Neurodegenerative Diseases with a cross-appointment within the Department of Biochemistry.

His research interests include prion diseases and related human neurodegenerative disorders such as Alzheimer’s disease.  His research focuses on developing improved mouse and cellular models of human neurodegenerative diseases that can be used to study the biology of these illnesses and as tools for developing novel therapeutics.

Board-Certified Palliative Social Worker and Trauma Therapist

Dr. Abigail Nathanson, LCSW, APHSW-C, is a board-certified palliative social worker and trauma therapist in New York City, and co-editor of the recently released book, The Practice of Clinical Social Work in Healthcare, from Springer Press. She is a part-time faculty member at New York University Silver School of Social Work, where she teaches Grief, Loss and Bereavement, and serves as peer reviewer for several academic journals. She has presented and published widely on topics relating to grief, trauma, caregiving and neurodegenerative disease, and was the 2022 Social Work in Hospice and Palliative Care Network's Professional Educator of the Year.

In her private group practice, Dr. Nathanson provides consulting and training services to non-profits and academic medical centers across the country, and specialized trauma therapy to patients dealing with illness, caregiving and loss. 

Autopsy Program Manager, National Prion Disease Pathology Surveillance Center

Danielle Jordan has been with the National Prion Disease Pathology Surveillance Center (NPDPSC) for
over twenty years and has risen through the ranks of Technician and Assistant Tissue Coordinator. She
continued her growth with the Center and became an Autopsy Case Coordinator, a position she held for
over a decade. During this time, she received her certification as a Grief Counselor as well as studying
psychology at Case Western Reserve University. Due to her diligence and dedication to serving the
NPDPSC and families, she was promoted to the Autopsy Program Manager where she collaborates with
the CJD Foundation, implements surveillance objectives mandated by the Centers for Disease Control
and Prevention (CDC) along with partnering with mortuary professionals and local/state Departments of
Health to expand regional autopsy sites throughout the United States.

Throughout her career, Ms. Jordan has served countless families grieving the loss of a loved one and in
2022 she created a social work internship program with the Jack, Joseph and Morton Mandel School of
Applied Social Sciences at Case Western Reserve University and holds the role of Field Instructor. She
continues to serve with professionalism and empathy in order to best serve families, physicians and
mortuaries as well as the purpose of the NPDPSC.

Autopsy Specialist, National Prion Disease Pathology Surveillance Center  

Meghan Lewis is a compassionate and dedicated Autopsy Coordinator at the National Prion Disease
Pathology Surveillance Center. With a Master’s Degree in Clinical Psychology, she brings a unique
perspective to the field, understanding the emotional needs of families affected by prion diseases. 
 
With nearly six years of invaluable experience at the NPDPSC, she has developed a deep knowledge of
prion diseases and their impact on patients and their families. As an integral part of the Center, Meghan
plays a crucial role in coordinating autopsies. Her genuine love for assisting families shines through, as
she provides a compassionate presence, navigating the complexities of the diagnostic process with
empathy and understanding.

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.

Lab Manager, National Prion Disease Pathology Surveillance Center

Tatiana Weaver is the Clinical Laboratory Manager at the National Prion Disease Pathology Surveillance
Center. Tatiana is a licensed Medical Laboratory Scientist, certified professional in Healthcare Quality
and holds a master’s degree from Ashland University.

University College London (UCL) Institute of Prion Diseases

After medical training at Cambridge and Oxford Universities and a PhD in the genetics of prion diseases at Imperial College London, Simon Mead is a consultant neurologist and Clinical Lead of the UK National Prion Clinic based at the National Hospital for Neurology and Neurosurgery, UCLH. Also working at the UK Medical Research Council’s Prion Unit where he is Deputy Director, his research interests include treatments and preparations for clinical trials in CJD and other human prion diseases, the discovery of genetic and epigenetic factors that cause or modify prion disease. He was made a Professor at UCL in 2014, NIHR Senior Investigator in 2018.

Grant Title: “Detection of residual prions from decontaminated medical and laboratory surfaces”

Jason C. Bartz, PhD is Professor and Chair in the Department of Medical Microbiology and Immunology at the Creighton University School of Medicine. Dr. Bartz earned a Ph.D. at the University of Wisconsin, Madison. Dr. Bartz investigates interspecies transmission, pathogenesis, and the biology of prion strains whose work has sought to understand how a protein-only infectious agent can perform complex biological tasks.

Grant Title: “Investigating prion protein seeding activity in Alzheimer’s disease and chronic traumatic encephalopathy”

Dr. Ignazio Cali received his doctoral degree (Ph.D.) from the University of Campania “Luigi Vanvitelli.” In 2015 he carried out his thesis work at Case Western Reserve University. Currently, Dr. Cali is an Assistant Professor at Case Western Reserve University and Associate Director of the National Prion Disease Pathology Surveillance Center (NPDPSC). His main research interests focus on understanding the molecular basis of phenotypic expression in comorbid neurodegenerative diseases, such as prion diseases and Alzheimer’s disease or prion diseases and chronic traumatic encephalopathy. This research aims at investigating the reciprocal impact that the two or more pathological proteins have on each other, and the pathological consequences of the interactions between different pathogenic proteins. Dr. Cali has published more than 40 articles on human prion diseases, and animal models of the disease.

Grant Title: “Generation of Humanised STX6 Overexpression Mice to Study Prion Disease Genetic Risk and as a Model for Therapeutic Intervention”

Dr Cunningham leads the Mouse Models of Prion Disease research group at the MRC Prion Unit and Institute of Prion Diseases, University College London, UK, with expertise in genome engineering, mouse genetics, and studying mouse models of neurodegeneration. His current work is focused on better understanding the molecular and phenotypic nature of prion disease, including modeling inherited prion disease variants, and working together with colleagues in human genetics to understand genetic risk factors.

Grant Title: “Elucidating the factors required for propagating human CJD prions”

In 2003, Parmjit was appointed a Professor of Molecular Cellular Biology in the Department of Neurodegenerative Diseases at the UCL Institute of Neurology. Subsequently, in 2013, he was seconded to the MRC Prion Unit at UCL to lead the Cell Biology Program tasked with investigating the central role of the prion protein in functions related to the development of prion disease. The program has achieved groundbreaking success in developing cells that can stably propagate sporadic Creutzfeldt-Jakob disease prions whilst also developing a multi-parametric imaging assay for the prion induced neurotoxic species to enable its purification and characterization.

Recently, in 2021, Parmjit was appointed a Commissioner for the Commonwealth Scholarship Commission (CSC) in the UK. The CSC provides the main UK government scholarship scheme led by international development objectives. It is an executive non-departmental public body, sponsored by the Foreign, Commonwealth & Development Office.

Grant Title: “Risk of cancer from reduced expression of PrPC-implications for prion disease treatment”

Dr. Lawson received her PhD in virology from the University of Melbourne, Australia and completed post-doctoral training in prion disease at the National Institute of Allergy and Infectious Diseases, National Institutes of Health (NIAID, NIH) Rocky Mountain Laboratories (USA) before returning to Australia as a Howard Florey Centenary Fellow in the Department of Pathology, The University of Melbourne. She is currently an Associate Professor in the discipline of pathology in The Department of Microbiology and Immunology at The University of Melbourne with research interests in infectious diseases, neurodegeneration and cancer.

Grant Title: “High-resolution structure determination of MM1 and MM2 sCJD prions”

Dr. Qiuye Li received his PhD from Case Western Reserve University and now works there as a postdoc scholar in the Dr. Surewicz laboratory. His graduate research has been focused on biophysical and structural characterization of amyloid fibrils and synthetic prions, and now he mainly works on high-resolution structural determination of disease-related amyloid fibrils. One of his recent postdoctoral studies has provided insights into the structural basis of cross-species seeding specificity in prion propagation. Dr. Li is currently working on the structure determination of brain-derived prions including those isolated from sCJD patients. These molecular structures will provide a stepping stone for the development of effective therapeutic strategies in human prion diseases.

Grant Title: “The identification of PrPSc interaction partners and the characterization of their role in prion infection and/or propagation”

Dr. Mercer has over 10 years of experience in the prion field. First as a PhD student at the Centre for Prions and Protein Folding diseases at the University of Alberta under the tutelage of Dr. David Westaway and later as a Postdoctoral Associate and now Instructor at the Boston University Chobanian & Avedisian School of Medicine in the laboratory of Dr. David A. Harris. His work has focused primarily on the function of PrPC, modeling genetic forms of prion disease in mice, and the discovery and characterization of prion disease therapeutics.

Grant Title: “Contribution of oligomeric prion populations to phenotypic heterogeneity in variably protease-sensitive prionopathy (VPSPr) versus silent prions”

Dr. Valerie Sim is a prion scientist at the Centre for Prions and Protein Folding Diseases at the University of Alberta, and a clinical neurologist at the University of Alberta Hospital, in Edmonton, AB, Canada. She is medical director of the Canadian CJD Association and co-founder of the Edmonton Cognitive Neurology clinic.

After her obtaining her BSc(Hon) and MD at the University of Calgary, followed by neurology residency at University of Ottawa, Dr. Sim completed a post-doctoral fellowship in prion disease research at Rocky Mountain Laboratories, NIH, Montana, under the supervision of Dr. Byron Caughey. She joined the University of Alberta Division of Neurology in 2009 and was promoted to associate professor with tenure in July, 2016.

In her research lab, Dr. Sim is interested in understanding how a prion’s size and shape can influence patterns of disease and risks of transmission. She isolates prion particles from infected brain samples using asymmetric flow field-flow fractionation, and examines pathogenesis in a “prion-disease-in-a-dish” brain slice culture model. From light scattering analysis and protein biochemistry to animal treatment experiments, her research publications have received international media attention.

She is also passionate about promoting science communication and has published a TEDx talk on prion disease. She regularly presents the science of prion disease to diverse communities across Alberta, Canada, and internationally.

Grant Title: “Development of a blood and urine prion diagnostic test for human prion diseases using the Real Time QuIC assays”

Sarah Vascellari is currently a researcher at the Department of Biomedical Sciences, University of Cagliari in Italy and she has been working in the prion field for the past 15 years. She earned her master’s degree “summa cum laude” in Biological Sciences in 2006 and her PhD in “Experimental Development of Antiviral Drugs” in 2011 from the University of Cagliari in Italy, working with Prof. Alessandra Pani. In her thesis work, she investigated the role of cholesterol in the pathogenesis of prion disorders.

After completing her PhD, she worked as a postdoctoral Visiting Fellow at the Laboratory of Persistent Viral Diseases, TSE/Prion Biochemistry Section, Rocky Mountain Laboratories, National Institute of Health (USA) with Dr Byron Caughey for 21 months in 2011-2012. During that time, she led the development of an ultrasensitive and specific assay for mouse prions called real-time quaking-induced conversion (RT-QuIC). She has then been able to use this extraordinarily sensitive new test to detect prions in the blood of scrapie-infected mice. She also showed for the first time that RT-QuIC assays can not only detect the classical protease-resistant forms of prion protein, but also much more protease-sensitive infectious forms that can predominate in some types of prion disease.

After this time, she returned to the University of Cagliari in Italy where she has successfully participated in several international collaborative projects. She has been co-principal investigator on a grant awarded from the Fondation Alliance Biosecure in 2012 and from the CJD Foundation in 2013 for the purpose of further developing and optimizing applications of RT-QuIC to prion detection and prion disease diagnosis. She further pursued the prion detection in urine, and her preliminary findings have been presented at the Prion conference.

During that time at University of Cagliari, she achieved the Specialization in Microbiology and Virology in 2018. In her thesis work, she focused on the use of RT-QuIC assay for the detection of prion protein in cerebrospinal fluid from Sardinian patients with suspected sporadic Creutzfeldt-Jakob disease. She has been also member of the Organizing Committee of International Summer School on “Prion and prion-like neurodegenerative disorders” in Italy from 2016 to 2017.

After this time, she had a researcher position at University of Cagliari in Italy in 2018 focusing her research activity on the role of microbiome and microbial metabolites in the pathogenesis of prion-like disorders as Parkinson’s disease. For this purpose, she also worked as a visiting researcher at the APC Microbiome Institute, University College of Cork in Ireland with Prof. John Cryan in 2019. She has also teaching experience as lecturer in Microbiology at the University of Cagliari.

She obtained the National Scientific Qualification for the position of associate professor in Italian Universities in 2022. She has 31 publications in international peer-reviews journals, 1 Monography, 1 Book chapter, 1 Conference Proceedings, 31 Abstract/posters and oral presentations in well-established national and international conferences.

Senior Advisor, Akin Gump Strauss Hauer & Feld, LLP, Washington, D.C.

Anna is a respected Food and Drug Administration (FDA) policy thought leader with more than 20 years of health care policy experience. Anna joined Akin after serving as the deputy commissioner for policy, legislation and International affairs—the top FDA policy official. As Deputy Commissioner, Anna played a critical role in overseeing the development and implementation of key policy initiatives and provided strategic policy direction to advance FDA’s public health mission.

Prior to being appointed to this senior leadership position at the FDA, Anna served as the long-time health policy director and senior advisor to Sen. Richard Burr (R-NC) for all health care issues, including health care policy under the jurisdiction of the Senate Finance Committee and Senate Health, Education, Labor, and Pensions (HELP) Committee. Anna’s contributions to advancing bipartisan FDA and medical and public health preparedness and response legislation were notable during her tenure with the Senate HELP Committee, including securing multiple patient-centered drug and device provisions in the Food and Drug Administration Safety and Innovation Act and 21st Century Cures Act.

Over the years, Anna has been a leader in advancing legislation to support innovation on behalf of patients and strengthen public health. She played a key role in the bipartisan negotiation and enactment of the most significant security enhancements to the United States’s pharmaceutical supply chain in the past 25 years through the Drug Quality and Security Act (DQSA). Anna was also instrumental in strengthening our medical and public health preparedness and response and medical countermeasure programs, through the Pandemic and All-Hazards Preparedness Reauthorization Act of 2013 (PAHPRA).

Anna was appointed by President George W. Bush to serve as an associate director at the Domestic Policy Council at The White House. In this role, she coordinated the development and implementation of a range of health care policy issues, including food, drug and public health policy. She coordinated the White House-led, interagency policy process to reauthorize the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2008.

MA, Administrative Lead, National Prion Disease Pathology Surveillance Center

Over 15 years of administrative experience in a research and clinical testing environment. I currently coordinate and assist with the day to day activities of the National Prion Disease Pathology Surveillance Center, focusing on data analysis and management of special projects including the Cleveland Alzheimer's Disease Research Center collaboration with the Cleveland Clinic, University Hositals and the Louis Stokes VA Hospital.

Histologist, National Prion Disease Pathology Surveillance Center

Author, Still Phyllis

Sometime trial attorney and perennial procrastinator, presently novelist, short story writer, and essayist, I’m the author of the multiply translated The Writer’s Brush, Paintings, Drawings, and Sculpture by Writers, which The New York Times Sunday Book Review described as “sparkling audaciously on every page,” and which the American Libraries Association called “a grand feat of research and interpretation.” My first novel, The Hand Before the Eye, black comic and shot through with religious themes—praised by Publishers Weekly for “its impassioned finale of spiritual redemption,” was a Vanity Fair Hot Type Recommendation. You’re My Dawg, Dog: A Lexicon of Dog Terms for People, has brought pleasure equally to dog and word lovers.

I was born in Philip Roth’s neighborhood, the Weequahic section of Newark, New Jersey, but did most of my growing up in suburban South Orange. There, at ten, I enrolled in private art classes and began oil painting which continued through high school.

At Washington University, St. Louis, where, apart from occasional cartoon contributions to the college paper and private sketching, my art career came to an end, and my creative impulses were mainly expressed in fiction writing. It was then that I sensed a connection between the urge to draw and paint and to write, but had no idea what it could be. When I ran across a reference to D. H. Lawrence’s paintings it made an impression; as did a book of Henry Miller’s watercolors that someone gave me not long after.

In the years that followed graduation, after I’d gotten my J.D. from Rutgers Law School and an L.L.M. from New York University Law School, had started practicing law, married and raised two children, I continued to make notes about writers who were artists from which The Writer’s Brush eventuated. I also began to study fiction writing and to write in the early morning before going to work. Now I have three novels under my belt and a fourth in the works.

Author, All is Well: Living Through Losing One You Love

About the Book:

This is a true story of what happens after a woman receives her unexpected diagnosis of a fatal disease—which is well towards the end of running its course. It’s an account of the journey from the husband’s point of view, narrating just over a month’s worth of days, from hopeful expectations falling to grim reality. That may sound tragic, even depressing, because there is sadness in these pages. But on the contrary, this is a beautiful book about faith, hope, and life even in the face of sorrow. The gracious acts of others paired with the poignant words of the author show the reader a true sense of what it means to truly love someone.My wife and I had been waiting to hear of a treatment program for her symptoms. Instead, we learned that the cause was untreatable. Life expectancy was one to two years, and she had been dealing with "something's wrong" for quite some time. With a son in college and a daughter in 7th grade, our world suddenly closed in and became very small. Nothing else mattered, and yet everything mattered. Never had my unshakable faith in God been so fiercely shaken. This book is comprised of my journal entries which provide a raw glimpse into my thoughts and emotions of her daily slipping away. It is written with the hope it might help others who must travel this hard journey, losing someone they love.

Reporter, USA Today

David Oliver is a wellness, lifestyle and entertainment reporter at USA TODAY. He has a master's degree in nonfiction writing from Johns Hopkins University and a bachelor's degree in journalism from the University of Maryland. He is also an adjunct journalism professor at the University of Maryland. He is a recipient of the AACR June L. Biedler Prize for Cancer Journalism and a GLAAD Award nominee. Talk to him about writing, health, fitness, media and LGBTQ+ issues. Oliver is based in Washington, D.C.

Author, Don’t Fade Away Starlight, and Poet, @rosepoemsthebitterandthesweet Instagram Poetry Series

Read Rosemary's Story here.

President, 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.