2023 Conference - Attendee Portal

Genetic Prion Disease Meeting - Springwood, Lower Level
*This workshop is only for families affected by a genetic prion disease. 

Moderator:

• Debbie Yobs, President/Executive Director, CJD Foundation 

Panelists:

• Michael D. Geschwind, MD, PhD, Professor of Neurology, University of California, San Francisco
• Jill Goldman, MS, MPhil, CGC, Columbia University Medical Center
• Richard Knight, BA, BM BCh, FRCP(E), Chair, CJD Support Network, U.K.
• Shashi Shetty, PhD, CLIA Lab Director, National Prion Disease Pathology Surveillance Center
• Sonia Vallabh, PhD, Scientist, Broad Institute

Sporadic Prion Disease Meeting - Atrium Ballroom
*This workshop is only for families affected by sporadic prion disease.

• Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center (NPDPSC)
• Lori Nusbaum, Program Director, CJD Foundation

2:15 - 3:00 pm: Prion Disease Basics - Clinical

• Brian Appleby, MD

3:00 - 3:45 pm: Prion Research Basics - Research

• Joel Watts, PhD, Associate Professor, Department of Biochemistry, University of Toronto

• Dr. Abigail Nathanson, LCSW, APHSW–C, ACS 

• Debbie Yobs

• Brian Appleby, MD

• Richard Knight, BA, BM BCh, FRCP(E)

CJD Foundation Research Grant Recipient Report Panels - Part 1
Participants will choose one group from this session and view 3 presentations.  Group A (3 speakers) and Group B (3 speakers) will present simultaneously in two different rooms. 

Group A - Grand Ballroom

Moderator:

• Joel Watts, PhD

Panelists:

• Leonardo Cortez, PhD
  Centre for Prions & Protein Folding Diseases, University of Alberta, Edmonton, Alberta, Canada
  “Prion protein aggregate size distribution drives clinical phenotype” 
• Bradley Groveman, PhD
  National Institutes of Health, Rocky Mountain Laboratories, Laboratory of Neurological Infections & Immunity
  “Regional tropism of sporadic CJD subtypes in human brain organoids” 
• Shashirekha Shetty, PhD
  National Prion Disease Pathology Surveillance Center, Case Western Reserve University, University Hospitals, Cleveland, OH
  “Examining copy number variants as a possible phenotype modifier in prion disease” 

Group B - Springwood

Moderator:

• Brian Appleby, MD

Panelists:

• Marcelo Barria, PhD
  National CJD Research & Surveillance Unit, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK
  “Assessing the replication properties of prion protein aggregates found in archived formalinfixed, paraffin embedded appendix tissue collected from the asymptomatic population by the highly sensitive in vitro prion amplification assay” 
• Joaquín Castilla, PhD
  Center for Cooperative Research in Biosciences (CIC bioGUNE), Basque Research & Technology Alliance (BRTA), Derio, Spain; IKERBASQUE, Basque Foundation for Science, Bilbao, Spain
  “Development & characterization of the fastest animal model able to propagate GSS prions faithfully” 
• Jaime Noguez, PhD
  National Prion Disease Pathology Surveillance Center, Case Western Reserve University, University Hospitals Cleveland Medical Center, Cleveland, OH
  “Improving the sensitivity of CSF RT-QuIC in humans by examining cases with indeterminate results” 

CJD Foundation Research Grant Recipient Report Panels - Part 2
Participants will choose one group from this session and view 2 presentations.  Group A (2 speakers) and Group B (2 speakers) will present simultaneously in two different rooms.  All 10 presenters will return to one room, the Grand Ballroom, for the Question & Answer panels and Moving Roundtables. 

Group A - Grand Ballroom

Moderator:

• Joel Watts, PhD

Panelists:

• Hermann Clemens Altmeppen, PhD
  Institute of Neuropathology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
  “Enzymatic PrP shedding in humans: Biomarker potential & therapeutic target” 
• Maria Letizia Barreca, PhD
  Department of Pharmaceutical Sciences (DPS), University of Perugia-Italy
  “Blocking the Neurotoxic Activities of Mutant Prion Proteins by a Novel Class of Therapeutic Agents”

Group B - Springwood

Moderator:

• Richard Knight, BA, BM BCh, FRCP(E)

Panelists:

• Zerui Wang, MD, PhD
  Department of Pathology, Case Western Reserve University 
  “Assessing Prophylactic & Therapeutic Efficacy of a Cellulose Ether Compound TC-5RW on CJD” 
• Rodrigo Morales, PhD
  Department of Neurology. The University of Texas Health Science Center at Houston
  “Development of a high throughput system for screening anti-prion molecules” 

Family Consultations (Optional) - Madison, Lower Level
Danielle Jordan and Meghan Lewis will be available for individual family consultations regarding status of autopsy results and/or the National Prion Disease Pathology Surveillance Center’s autopsy program. 

• Danielle Jordan, Autopsy Program Manager, National Prion Disease Pathology Surveillance Center
• Meghan Lewis, Autopsy Specialist, National Prion Disease Pathology Surveillance Center  

7:00 - 7:30 pm

• Mayra Lichter, Chair, CJD Foundation Board of Directors
• Patricia McGill, Treasurer, CJD Foundation Board of Directors 

• Lori Nusbaum

• Clarence Hunter, CJD Foundation Grants Committee, Members, CJD Foundation Board of Directors
• Brian Appleby, MD

• Ryan Maddox, PhD, Epidemiologist, Prion and Public Health Office Division of High–Consequence Pathogens and Pathology 

• Lauren Crowder, PhD, MPH, CPH, Executive Scientific Officer, American Red Cross 

• Brian Appleby, MD
• Tatiana Weaver, Lab Manager   
• Dr. Shashi Shetty, CLIA Lab Director   
• Dr. Jamie Noguez, CSF Section Head   
• Danielle Jordan, Autopsy Program Manager

• Suzanne Solvyns, Co–Chair, CJD International Support Alliance 

• Trevor Baierl, Member, CJD Foundation Board of Directors 
• Amanda Kalinsky, Member, CJD Foundation Board of Directors 
• Sonia Vallabh, PhD, Broad Institute

• Kendall Hussey, Senior Policy Advisor, Akin Gump Strauss Hauer & Feld, LLP

• Debbie Yobs