Due to the COVID-19 pandemic, the CJD Foundation Family Conference has been cancelled.

If you registered for the conference, please watch your email for information regarding cancellations and refunds.  If you registered under the CJD Foundation block of rooms, the Washington Court Hotel will be canceling your reservation.  If you do not receive a cancellation receipt from the hotel in the coming days, please contact them at (202) 628-2100.

Some of the presentations that would have been provided at the conference will be provided later in the year via webinar or teleconference, and will be posted on the CJD Foundation website.  All presentations will be announced on email, social media, and our website at https://cjdfoundation.org/upcoming-events.

We will greatly miss this opportunity to gather with the CJD community in person, but look forward to sharing with you updates from the nine research grants we awarded this year, thanks to your generous support.  We at the CJD Foundation send our best wishes, and our hopes that you remain safe and healthy.

What You'll Learn at the CJD Foundation Family Conference

The CJD Foundation Family Conference offers families impacted by prion disease the opportunity to connect with one another and feel part of a community.

Over two days, you'll hear from grant recipients about their research, see how CJD Foundation programs are working for you, and learn about advocacy channels.

The 2020 agenda will be released in the spring.

Please review the 2019 agenda for a sense of the sessions offered

Day 1 at the 2019 Conference

11:00 am - 7:00 pm Registration
 
12:15 - 2:15 pm Sporadic Prion Disease Meeting
*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
*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
 
2:30 - 4:00 pm Prion Disease Overview
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

Katrina Hallmark, PsyD, Neuropsychologist
Danielle Jordan, Autopsy Program Manager, NPDPSC
6:00 - 7:30 pm Welcome Reception

 

Day 2 at the 2019 Conference

Wear purple for our group photos!

7:00 am Registration
 
7:00 - 8:30 am Continental Breakfast
 
8:30 - 8:40 am  Welcome

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

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

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

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

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

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

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
 
1:45 - 2:00 pm Snack Break
 
1:45 - 3:45 pm Moving Roundtables
 
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
 
7:30 pm Banquet

 

 

 

Day 3 at the 2019 Conference

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

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

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

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
 
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!
 

 

Advocacy Day

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!  

Watch Sessions from 2019

2019 Keynote Speaker Richard Knight - Prion Diseases, An Overview

Nanoparticle-mediated brain delivery of a tetracationic porphyrin with potent anti-prion activities

Cerebral neuronal dysfunction associated with human prion diseases

Development of a quantitative, real-time Protein-Misfolding by Cyclic Amplification (PMCA) reaction

The 2019 Centers for Disease Control and Prevention (CDC) Report

Modeling Creutzfeldt-Jakob Disease Using Human iPSC-derived Neurons

Determining the therapeutic potential of anti-PrP nanobody

Assessing long-term stability of cerebrospinal fluid PrP levels in genetic prion disease mutation carriers