Kristal Enter
Franklin, MA
- TOLL-FREE HELPLINE: 1-800-659-1991
- CONTACT US
- Supporting Families Affected by Prion Disease
Contributed by: The Jeffrey and Mary Smith Family Foundation; Zoë Smith Jaye and Jenny Smith Unruh; and Mary Smith
Established in 2015
Franklin, MA
Bloomington, IN
Donald Friedman shares the story of caring for his sister, Phyllis, in Still Phyllis: A Caregiver’s Memoir of Dementia and Creutzfeldt-Jakob Disease.
David Langan captured the CJD journey of his wife, Zyvonne, in All is Well: Living Through Losing One You Love.
Evelyn M. Kendall lost her life to CJD on August 2, 2019.
Evelyn’s family was the 2nd highest fundraising team nationally in 2020 and the top fundraising team for Strides for CJD – Arlington, TX in 2021.
Amy Collins lost her life to CJD on December 14, 2018.
The Collins Family was the 3rd highest fundraising team nationally in 2021, the 4th highest fundraising team nationally in 2022, 2023, and 2024, and the 2nd highest fundraising team nationally in 2025.
Jerry Yaffa lost his life to CJD on June 21, 2005.
The Yaffa Family was the 2nd highest fundraising team nationally in 2021 and the 3rd highest fundraising team nationally in 2022 and 2023, the 2nd highest fundraising team nationally in 2024, and the top fundraising team nationally in 2025.
Back to List of Grants Research Grants Supported Back to list Memorial Grants
Back to List of Grants Research Grants Supported Back to list Memorial Grants
Bridgeport, WV
Dr. Gary K. Low lost his life to CJD on August 29, 2020.
The Low Family was the 2nd highest fundraising team nationally in 2022.
Grant Title:
Evaluating prion vaccines in transgenic mouse models of familial prion diseases
Location:
University of Alberta, Edmonton, Alberta, Canada
Grant Year: 2020
Alex wrote the script and directed the film Farewell Fire, a story about life, death, and the perspective that nature gives us on how to live, inspired by his father who passed away from Creutzfeldt-Jakob Disease in 2020.
Contributed by: The Ersoy Family
Established in 2025
Contributed by:the CAS Foundation
Established in 2025
Contributed by: Henry Mazzola and Family and Friends
Established in 2025
Contributed by: James Carns
Established in 2025
Contributed by: His Family
Established in 2025
Contributed by: Terry McCall
Established in 2025
Contributed by: James Winslow
This grant was established in 2025
Contributed by: Deanna Barnette
Established in 2025
Contributed by: Sarah Morgan
This grant was established in 2025
Grant Title: Multi-center assessment of olfactory swab procedure performed by non-otolaryngologists for improving and simplifying human prion disease diagnosis
Location: Department of Neuroscience, Biomedicine and Movement Sciences, University of Verona, Verona, Italy
Grant Year: 2025
Grant Title: Engineered biosensors for improved prion detection
Location: Tanz Centre for Research in Neurodegenerative Diseases and Department of Biochemistry, University of Toronto
Grant Year: 2025
Grant Title: Higher-resolution visualization of prion fibrils in neurons and extracellular vesicles using state-of-the-art Cryo-TEM and FIB-SEM imaging
Location: Rocky Mountain Laboratories, NIAID, NIH
Grant Year: 2025
Grant Title: Assessing efficacy of a PrP-lowering Molecular Gate as a therapeutic for prion disease
Location: Gate Bioscience
Grant Year: 2025
Grant Title: Engineering human cells to propagate fluorescent prions for live monitoring of prion infection and high-resolution in situ prion structure determination
Location: Imperial College London, Faculty of Medicine, Department of Infectious Disease,
Synthetic and Structural Biology Section
Grant Year: 2025
Grant Title: Assessing retinal function as a potential early biomarker for Creutzfeldt-Jakob Disease (CJD)
Location: Department of Optometry and Vision Sciences, The University of Melbourne
Grant Year: 2025
Grant Title: Characterization of synaptic abnormalities in iPSC-derived neurons from E200K carriers
Location: Boston University Chobanian & Avedisian School of Medicine
Grant Year: 2025
Grant Title: Investigating prion protein seeding activity in non-prion disease dementia
Location: Department of Medicine and Surgery, University Kore of Enna, Italy; Adjunct Assistant Professor in the Department of Pathology, at Case Western Reserve University (CWRU); Associate Director at National Prion Disease Pathology Surveillance Center (NPDPSC), Cleveland, OH
Grant Year: 2025
Grant Title: Refined transgenetic approaches to investigate selective adaptation of human prions during intracranial and peripheral transmissions
Location: Prion Research Center, Colorado State University
Grant Year: 2025
President and Executive Director
Morris Plains, New Jersey
Mt. Prospect, Illinois
Rootstown, Ohio
Program Director
Mount Pleasant, South Carolina
Frank S. Lamari, Jr. lost his life to CJD on May 14, 2021. The Lamari Family began hosting Strides for CJD in Johnsonburg, PA in October 2021 and was the 5th highest fundraising team nationally in 2022 and the 2nd highest fundraising team nationally in 2023.
1-26-24 Clinical Trial Announcement: Multiple Sites Now Open In and Outside the U.S. To learn about additional sites that have opened: Information on ION717 Clinical
Contributed by: The Swoyer Family
This grant was established in 2023.
Alexandria, VA
Grant Title:
Validation of a non-invasive diagnostic test for prion diseases using tear fluid
Location:
Dementia Research Unit, Dept. of Neurology in Göttingen, National Reference Center for TSE and German Center for Neuro-degenerative diseases, Germany
Grant Year: 2024
Grant Title:
Bridging the pre-clinical gap for a small brain-penetrant molecule that reduces PrPC levels
Location:
Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto
Grant Year: 2024
Grant Title:
Understanding the molecular mechanism of spontaneous prion emergence in knock-in mouse models
Location:
Tanz Centre for Research in Neurodegenerative Diseases, University of Toronto
Grant Year: 2024
Grant Title:
Development of ADAM8-based Gene Therapy for CJD
Location:
NPDPSC, Case Western Reserve University
Grant Year: 2024
Grant Title:
Generating cerebral organoids from donors with sporadic Creutzfeldt-Jakob Disease
Location:
Postdoctoral Research Fellow at Rocky Mountain Laboratories, National Institutes of Health, Hamilton, Montana
Grant Year: 2024
Grant Title:
Exploring the efficacy of dominant negative protein-based gene therapy for different prion diseases: in vivo proof-of-concept study
Location:
Center for Cooperative Research in Biosciences (CIC bioGUNE), Basque Research and Technology Alliance (BRTA), Derio, Spain
Grant Year: 2024
Grant Title:
Investigation of Glycoprotein Nonmetastatic Melanoma protein B (GPNMB) as potential therapeutic target in Prion Diseases
Location:
University of Zurich
Grant Year: 2024
Moorpark, California
Rosemary Vaswani is a poet and wrote several poems about CJD in memory of her husband. Follow her on Instagram @rosepoemsthebitterandthesweet.
New York, New York