Professor of Neurology, UCSF

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.

Director, National Prion Disease Pathology Surveillance Center (NPDPSC)

Brian Appleby, MD, is a neuropsychiatrist at University Hospitals Cleveland Medical Center 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 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.  

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. Following his
training, he founded and directed the Johns Hopkins Creutzfeldt-Jakob Disease (CJD) Program
and was co-director of the Frontotemporal Dementia and Young-Onset Dementia Clinic. He
joined University Hospitals-Cleveland Medical Center in 2013.

MPhil, Columbia University Medical Center

Jill S. Goldman, MS, MPhil,CGC is a genetic counselor at The Taub Institute at Columbia University Irving
Medical Center where she is a partner in the Center of Excellence for Alzheimer’s Disease. She has
worked as a genetic counselor since 2000; before that she was a health education specialist and science
teacher.

Jill is a member of the National Society of Genetic Counselors (NSGC) Special Interest Group on
Neurogenetics, a member of the American Academy of Neurology, and an appointed member of the
Medical Advisory Committee of the Association for Frontotemporal Dementia. Additionally, she leads
two support groups, one for caregivers of people with frontotemporal dementia and the other for
people living with early-stage dementia. She also created and coordinates “A Friend for Rachel,” a
companionship program in which people with early to moderate dementia are paired with Columbia
pre-medical students.

Jill has authored many papers and book chapters including: “Genetic counseling and testing for
Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the
National Society of Genetic Counselors” and “New approaches to genetic counseling and testing for
Alzheimer's disease and frontotemporal degeneration”. She is the editor of the textbook: Genetic
Counseling for Adult Neurogenetic Disease: A Casebook for Clinicians, Springer, 2015.

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.

CLIA Lab Director, National Prion Disease Pathology Surveillance Center

Dr. Shashirekha Shetty is currently the CLIA and molecular laboratory section director for the National
Prion Disease Pathology Surveillance Center (NPDPSC), as well as director of Cytogenetics Laboratory at
University Hospitals Cleveland Medical Centre (UHCMC) in the Department of Pathology and Center for
Human Genetics. She is an associate professor and a program Director of the Laboratory Genetics and
Genomics fellowship program at Case Western Reserve University.

She received her PhD from the University of Mumbai, India. She received her European Diploma in
Molecular Cytogenetics from the University of Auvergne, France. She completed her postdoctoral
fellowship at the Manitoba Institute of Cell Biology (University of Manitoba, Canada).
Since 2005, she has been working on understanding the influence of copy number variants in the
context of neurological disorders. She was introduced to genetics of prion disease during her molecular
fellowship in 2016 and has since been involved in the diagnostics of molecular 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 forthcoming book, The Practice of Clinical Social Work in
Healthcare, from Springer Press, due out this summer. 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.

Epidemiologist, Prion and Public Health Office Division of High–Consequence Pathogens and Pathology 

Ryan Maddox is an epidemiologist with the National Center for Emerging and Zoonotic Infectious
Diseases, Centers for Disease Control and Prevention (CDC). In this role, Dr. Maddox coordinates
nationwide surveillance of human prion diseases, including Creutzfeldt-Jakob disease. He also conducts
national surveillance of Kawasaki disease.

Dr. Maddox received his Bachelor of Science from Auburn University in 1998. In 2000, he earned his
Master of Public Health in epidemiology from Emory University’s Rollins School of Public Health in
Atlanta, Georgia, and he earned his PhD from the same institution in 2012. Dr. Maddox is the author or
co-author of many publications covering various aspects of prion diseases in the United States.

Executive Scientific Officer, American Red Cross 

Dr. Lauren Crowder is a scientific thought leader with over 15 years of research experience, spanning
from bench science to public health policy research. Lauren received her Doctor of Philosophy in
Translational Health Science from The George Washington University, where her dissertation focused on
the decision-making process at multiple levels of the US blood system. She also holds a Master of Public
Health from the University of Pittsburgh and a Bachelor of Science in Environmental Health Science from
Salisbury University.

Dr. Crowder has been with the Red Cross for 8 years, previously working full-time as an Epidemiologist
in Scientific Affairs. She is currently employed full-time as the Associate Director of Implementation
Science at a global clinical research organization but continues to work part-time as an Executive
Scientific Officer within Scientific Affairs at the American Red Cross, also as adjunct faculty at George
Washington University. Lauren has authored over 25 publications, 3 book chapters, and has presented
posters, oral abstracts, and invited educational sessions at regional, national, and international
conferences as well as for a variety of internal and external stakeholders.

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.

 Co–Chair, CJD International Support Alliance 

Suzanne first heard about Creutzfeldt-Jakob disease (CJD) in the early 90’s, when a media report
announced that 2500 Australians, who had been treated with human pituitary hormones for infertility
and short statue, were now at an increased risk of developing CJD. This followed the deaths of four
women who had died from Iatrogenic CJD due to contaminated pituitaries in batches of human pituitary
hormones in Australia.

Suzanne became a founding member of the CJD Support Group Network (CJDSGN) in 1993 as NSW Co-
coordinator and in 2004 was appointed Director. She was instrumental in the expansion of the network
to offer support and assistance to all Australians affected by prion diseases.

Since early 2008, conducting a national education program has helped to educate health care
professionals about CJD and other prion diseases, promote the work of the CJDSGN and emphasise the
need of CJD patients and their families as well as the need for equity of care for at risk patients.
When the CJD International Support Alliance (CJDISA) was formed in 2006, Suzanne took on the role as
co-chair of the alliance, a role that today still provides the opportunity to work with like organizations
around the world and network with researchers and experts who are members of the ‘Friend and
Advisor Group’ of the CJDISA.

Senior Policy Advisor, Akin Gump Strauss Hauer & Feld, LLP

Kendall identifies and conducts research on key and emerging health care policy issues, including
funding opportunities, and legislative and regulatory developments to address client interests. She also
advocates on behalf of clients in congressional lobbying efforts.

Kendall assists with the research, development, and implementation of a legislative strategy for her
clients. She has worked on various aspects of the Affordable Care Act and regulations that have
stemmed from that law. She works on behalf of several health care organizations, including coalitions of
health care providers, medical professionals, patient advocates and other stakeholders.

Before joining Akin, Kendall was a senior policy specialist at another Washington, D.C., law firm. Prior to
that, she worked for U.S. Sen. Richard Burr (R-NC) on the Senate Health, Education, Labor and Pensions
Committee, assisting the Subcommittee on Bioterrorism and the Public Health Preparedness Staff
Director with preparation and coordination of hearings and markups, performing research on various
legislative projects and meeting with constituents and stakeholders on health policy issues.
While working for Sen. Burr, Kendall gained extensive knowledge of the legislative process, including the
development and advancement of health legislation. Prior to her work in the Senate, Kendall also
worked at a Washington-based government relations firm that assists trade associations, companies,
cities and universities in their dealings with the federal government.