CJD Foundation Family Conference
Washington, D.C.
Washington Court Hotel
Tentative Schedule
July 6-9, 2007

The following is a listing of the scientists who will be presenting at the 5th Annual CJD Foundation Family Conference.

Click here to view the 2007 CJD Annual Family Conference registration form.

Friday, July 6

11:30-3:00 CJD Foundation Board of Directors’ Meeting-Capitol Room
3:00-4:30 Familial CJD Meeting– Capitol Room
4:30-5:30 International CJD Support Alliance Meeting– Capitol Room
4:30-7:00 Registration-Atrium Foyer
6:00-7:30 Casual Welcome Reception

Saturday, July 7

7:00-9:30 Registration-Atrium Foyer
7:00-8:00 Continental Breakfast, Atrium Ballroom
8:00-8:10 Welcome
- Florence Kranitz, President, CJD Foundation, Akron, Ohio
8:10-8:30 Memorial Service
- Mayra Lichter
8:30-9:00 Research and U.S. Surveillance
- Pierluigi Gambetti, M.D., Professor, Division of Neuropathology and Professor of Psychiatry, Case Western Reserve University School of Medicine; Director, The National Prion Disease Pathology Surveillance Center, Cleveland, Ohio; Medical Director, The CJD Foundation
9:00-9:30 Biochemical Detection of Prions in Blood
- Claudio Soto, Ph.D., Professor of Neurology, Biochemistry, & Molecular Biology and Neurosciences & Cell Biology, University of Texas, Medical Branch. Galveston, Texas
9:30-9:45 Research Report -Comparative Study of Prion Strains Associated with Iatrogenic and Sporadic Creutzfeldt - Jakob disease
- Wen-Quan Zou, M.D., Ph.D, Assistant Professor Department of Pathology, Case Western Reserve University, Cleveland, Ohio, Recipient of The first CJD Foundation research grant
9:45-10:00 Break
10:00-10:30 Development of Potential Therapeutics for Prion Diseases
- Katsumi Doh-ura, M.D., Professor, Department of Potential Therapeutics for Prion Diseases, Tokyo University School of Medicine. Sendai, Japan
10:30-11:00 Quinacrine Clinical Trial Report
- Gillian Devereux, R.N., M.A., Clinical Study Coordinator for the Quniacrine Trial, Memory and Aging Center, University of California at San Francisco. San Francisco, California
11:00-11:30 Blocking Protein Misfolding-Research Review
- Neil Cashman, M.D., FRCP(C), Neurologist-neuroscientist, Scientific Director PrioNet, Canada, University of British Columbia. Vancouver, British Columbia, Canada
11:30-12:30 Lunch Break
12:30-1:00 Epidemiology of Human Prion Diseases CJD and vCJD
- Lt. James J. Sejvar, M.D., Neuroepidemiologist, Centers for Disease Control and Prevention. Atlanta, Georgia
1:00-1:30 Surveillance of CJD and related disorders in Europe: Fifteen years experience. Maurizio Pocchiari
- M.D., Director, Italian CJD Surveillance, Research Virology, Istituto Superiore di Sanita. Rome, Italy
1:30-2:00 CJD in the U.K.: The Story Since 1990
- Richard Knight, FRCP(E), Director, United Kingdom, National CJD Surveillance Unit. Edinburgh, Scotland
2:00-2:20 New Insights on Gerstmann-Straussler-Scheinker Disease from Men and Mice
- Bernardino Ghetti, M.D., Distinguished Professor of Pathology and Laboratory Medicine, Psychiatry, Medical and Molecular Genetics and Neurology, University of Indiana, Indianapolis, Indiana; President of the International Society of Neuropathology; Co-Director of The National Prion Disease Pathology Surveillance Center
2:20-2:35 Break
2:35-3:20 Scientific Panel Discussion and Questions (Moderators, Nick George and Mark Goldfarb)
- Pierluigi Gambetti, M.D.
- Richard Knight, FRCP(E)
- Gillian Devereaux, R.N., M.A
- Bernardino Ghetti, M.D.
- Maurizio Pocchiari, M.D.
- Dr. Katsumi Doh-ura, M.D.
- Claudio Soto, Ph.D.
- Neil Cashman, M.D.
- James Sejvar, M.D
3:20-4:45 Moving Round Table Discussion: Researchers and Families
7:00-7:30 Reception - Atrium Foyer
7:30 Dinner-Atrium Ballroom
-CJD Foundation Report - Florence Kranitz,
The Importance of Political Advocacy
- Tom Sheridan, President, The Sheridan Group, Washington, D.C.

Sunday, July 8

7:15-8:30 Continental Breakfast
8:30-8:50 Jonathan Simms
- Update, Don Simms, CJD Alliance and International CJD Support Alliance member, Belfast, Northern Ireland
8:50-9:05 CJD Foundation Questionnaire Report
- Tracie Kedzierski, CJD Foundation Board Member and Questionnaire Chairperson, Newport, Rhode Island
9:05-9:25 Report; Australian CJD Support Group Network
- Suzanne Solvyns and Mandy Newton, Australia, Co-Chairpersons
9:05-9:45 Report; Japanese CJD Foundation
- Yumiko Yamamoto, R.N.
9:45-10:00 Red Cross Look Back Study
- KerriDosey American Red Cross
10:00-10:25 Living with Familial CJD
- Deana Simpson, RN, Founder and Director, CJD Insight, McComb, Michigan
10:25-10:40 Break
10:40-10:55 Report; CJD International Support Alliance
- Suzanne Solvyns, co-chair
10:55-11:10 CJD Support Network, U.K. Report
- Gillian Turner, National Coordinator, CJD Support Network, London, England
11:10-11:45 Guided Family Discussion
11:45-12:45 Lunch
12:45– 1:00 CJD Foundation Reports
- Mark Goldfarb, Chairman, Board of Directors CJD Foundation, Akron, Ohio
- Ruthie George, Treasurer, CJD Foundation, Akron, Ohio
1:00-1:20 Creekstone Farms and the U.S.D.A.
- Will Miller
1:20-3:00 Advocacy Groups Prepare for Congressional Visits
- Hood Harris, Chief of Staff, Congressman, Robert Aderholt, Alabama,
Individuals and groups assigned to congressional visits on Monday will meet for advocacy training.

Monday, July 9

9:00-4:30 Scheduled Congressional Visits

(Carrie Harris, Manager of the NPDPSC will be available for questions in the Capitol Room during the conference. Times will be provided at check-in.)