Full Agenda

Friday, July 12

11:00 am - 7:00 pm Registration - Lower Level
 
12:15 - 2:15 pm Sporadic Prion Disease Meeting - Ballroom 2
*This workshop is only for families


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

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

Deana Simpson, MSN, RN - Chairman, Member, CJD Foundation Board of Directors
Michael D. Geschwind, MD, PhD, Professor of Neurology, UCSF
Richard Knight, BA, BM BCh, FRCP(E), Medical Director, CJD Support Network, U.K.
2:15 - 2:30 pm  Coffee Break - Grand Ballroom Lobby
 
2:30 - 4:00 pm Prion Disease Overview - Ballroom 2
These sessions provide an excellent foundation for tomorrow's scientific presentations.


2:30 - 3:15 pm: Prion Disease Basics
Brian Appleby, MD, Director, NPDPSC

3:15 - 4:00 pm: Prion Research Basics
Kevin Keough, Executive Director, Alberta Prion Research Institute
4:00 - 5:00 pm Bereavement Workshop - Ballroom 2

Katrina Hallmark, PsyD, Neuropsychologist
Danielle Jordan, Autopsy Program Manager, NPDPSC
6:00 - 7:30 pm Welcome Reception - Executive / Sagamore / Ashlawn Rooms - Lower Level

 

Saturday, July 13

7:00 am Registration - Lower Level
 
7:00 - 8:30 am Continental Breakfast - Grand Ballroom Lobby
 
8:30 - 8:40 am  Welcome - Grand Ballroom

Debbie Yobs, President, CJD Foundation
 
8:40 - 9:10 am Memorial Service - Grand Ballroom
 
9:10 - 9:15 am Opening Remarks and Introduction - Grand Ballroom

Brian Appleby, MD, Director, NPDPSC
9:15 - 9:45 am Keynote Address: Prion Diseases, An Overview - Grand Ballroom

Richard Knight, BA, BM BCh, FRCP(E), Chair, Management Committee, the UK CJD Support Network
 
9:45 - 9:50 am Keynote Q&A - Grand Ballroom
 
9:50 - 10:05 am Coffee Break
 
10:05 - 11:15 am CJD Foundation Research Grant Recipient Reports - Grand Ballroom

10:05 - 10:20 am: Cerebral Neuronal Dysfunction associated with Human Prion Diseases
Simote Totauhelotu Foliaki, PhD, National Institute of Allergy and Infectious Diseases

10:20 - 10:35 am: Development of a Quantitative, Real-time Protein-Misfolding by Cyclic Amplification (PMCA) Reaction
Graham S. Jackson, PhD, Medical Research Council Prion Unit, University College London

10:35 - 10:50 am: Modeling Creutzfeldt-Jakob Disease Using Human iPSC-derived Neurons
Gustavo Mostoslavsky, MD, PhD, Center for Regenerative Medicine/Boston University School of Medicine

10:50 - 11:00 am: Investigating the Relevance of Blood DNA Methylation Signals for Disease Management in CJD (via video)
Emmanuelle Vire, PhD, Medical Research Council Prion Unit at University College London

11:00 - 11:15 am: Q&A Panel
Moderator: Brian Appleby, MD
 
11:15 - 11:30 am Alberta Prion Research Institute (APRI) Report - Grand Ballroom

Kevin Keough, PhD, FCAHS, Executive Director, APRI
 
11:30 - 11:35 am APRI Report Q&A - Grand Ballroom
 
11:35 am - 12:25 pm Lunch - Grand Ballroom
 
12:25 pm Group Photo Opportunity in the Hotel Lobby
 
12:40 - 1:25 pm National Prion Disease Pathology Surveillance Center Panel - Grand Ballroom

Moderator: Brian Appleby, MD
Miriam Warren, Histologist, Case Western Reserve University
Crissy Moskal, Administrative Manager
Danielle Jordan, Autopsy Program Manager
 
1:25 - 1:40 pm The 2019 Centers for Disease Control and Prevention (CDC) Report - Grand Ballroom

Ryan Maddox, PhD, Epidemiologist, Prion and Public Health Office Division of High-Consequence Pathogens and Pathology
 
1:40 - 1:45 pm CDC Report Q&A - Grand Ballroom
 
1:45 - 2:00 pm Snack Break
 
1:45 - 3:45 pm Moving Roundtables - Grand Ballroom
 
3:45 - 4:15 pm Group Photo Opportunity in front of the Capitol Building
 
4:00 - 6:00 pm Family Consultations (Optional)
Crissy Moskal, Administrative Manager of the National Prion Disease Pathology Surveillance Center; and Danielle Jordan, Autopsy Program Manager, will be available in the Madison Room for individual family consultations regarding status of autopsy results and/or the autopsy program.
 
7:00 - 7:30 pm Reception - Grand Foyer - Lower Level
 
7:30 pm Banquet - Grand Ballroom - Lower Level

 

Sunday, July 14

7:45 - 9:00 am Continental Breakfast - Grand Ballroom Lobby
 
8:30 - 9:00 am The CJD International Support Alliance - Grand Ballroom

Suzanne Solvyns & Deana Simpson, Co-Chairs, CJD International Support Alliance
9:00 - 9:15 am  CJD Foundation Report - Grand Ballroom

Stuart Yaffa, Treasurer, CJD Foundation Board of Directors
 
9:15 - 9:30 am CJD Foundation Grants Program

Janine Kock & Brian Appleby, CJD Foundation Grants Committee, Members, CJD Foundation Board of Directors
 
9:30 - 9:35 am Video Update of 2016 CJD Foundation Research Grants
 
9:35 - 10:15 am CJD Foundation Research Grant Recipient Reports - Grand Ballroom

9:35 - 9:50 am: Assessing Long-Term Stability of Cerebrospinal Fluid PrP Levels in Genetic Prion Disease Mutation Carriers
Steven E. Arnold, MD, Professor of Neurology, Harvard Medical School

9:50 - 10:05 am: Nanoparticle-Mediated Brain Delivery of a Tetracationic Porphyrin with Potent Antiprion Activities
Roberto Chiesa, PhD, Laboratory of Prion Neurobiology, Department of Neuroscience

10:05 - 10:20 am: Determining the Therapeutic Potential of Anti-PrP Nanobody
Jiyan Ma, PhD, Professor, Center for Neurodegenerative Science, Van Andel Institute
10:20 - 10:35 am Coffee Break
 
10:35 - 10:50 am Grant Recipient Reports Q&A Panel

Moderator: Richard Knight, BA, BM BCh, FRCP(E)
 
10:50 - 11:05 am Antisense Oligonucleotides (ASOs) and Engaging with Patient Families 

Patrick Cauntay, Patient Advocacy, Ionis Pharmaceuticals, Inc.
 
11:05 - 11:20 am Family Stories, CJD Foundation
 
11:20 - 11:30 am Closing Comments

Debbie Yobs, President, CJD Foundation
 
11:30 am - 12:30 am Moving Roundtables
 
12:00 - 1:00 pm Lunch - Grand Ballroom
 
1:30 - 2:30 pm Advocacy Training
This session will prepare families to make advocacy visits on Monday. Families NOT visiting Capitol Hill are also encouraged to stay and learn how to advocate from home!
 

 

Monday, July 15

Time Varies Capitol Hill Visits
Family members who have registered for advocacy visits will receive their packets on Sunday. On Monday, stop in the lobby to check in before visits. After visits, drop off evaluation forms in lobby or send to CJD Foundation. Thank you for making your voice heard on Capitol Hill!  
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Watch Sessions from 2018

Why Do People Get CJD?

Neuroprotective N1 Fragment of the Prion Protein as a New Treatment

Investigation of Prion Inactivation by Reactive Oxygen Species in Vivo

Highly Synergistic Combination Therapy for Prion Diseases