Read with caution!

This post was written during early stages of trying to understand a complex scientific problem, and we didn't get everything right. The original author no longer endorses the content of this post. It is being left online for historical reasons, but read at your own risk.

Below is the website for the 9th Annual CJD Foundation Family Conference, held July 8-10, 2011 in Washington DC.

The site contains an archive of video and powerpoint materials from all of the presentations given at the 2011 conference, as well as links to the equivalent sites for the past several conferences.




The videos are well-organized and curated.  Many are divided into titled chapters to allow for targeted viewing.

Below is a list of the 2011 speakers and topics.  I plan to post separately on the 7/9/11 presentation by Gianluigi Forloni which is especially on-point for FFI.  Dr. Forloni studies the therapeutic effects of doxycycline in symptomatic CJD patients and, as of 2011, is beginning a long-term study looking at the efficacy of doxycycline in pre-symptomatic FFI mutation carriers.


Saturday, July 9th 2011


  • Conference Welcome, Florence Kranitz
  • The Difficulties in Making a Diagnosis of CJD, Richard Knight
  • Specificity of Human Prion Detection in CSF, Ryuichiro Atarashi
  • Spontaneous Prion Disease in Transgenic Mice and Implications for Sporadic CJD, Joel Watts
  • The Future of Prion Disease Diagnostics, David Wishart
  • Urinary-Derived Fertility Drugs: CJD Risk?, Neil Cashman
  • Doxycycline Clinical Trial results, Gianluigi Forloni
  • National Prion Disease Pathology Surveillance Center, Pierluigi Gambetti
  • European Surveillance Overview, Maurizio Pocchiari
  • Summary, Daniel Krewski

Sunday, July 10th 2011


  • Questionnaire Report, Lori Nusbaum
  • The Centers for Disease Control and Prevention Report: Prion Disease Activities at CDC, Ryan A. Maddox
  • Alberta Prion Research Institute (APRI), Kevin Keough
  • Pentosan Polysulphate: A Friendly Delivery System for Therapy in Prion Diseases, Maurizio Pocchiari
  • Yeast Model for Studying Heritable Mamalian Prion Diseases, Yury O. Chernoff
  • Developing a prion susceptible human neuronal cell line based on reprogramming fibroblasts from CJD/FFI affected patients, Joaquin Castilla
  • Targeting the Functional Activity of PrPc as a Novel Strategy for Drug Discovery in Prion Diseases, Emiliano Biasini
  • In Vitro Options, A Personal Story, Bradley Kalinsky & Amanda Baxley Kalinsky
  • CJDISA memberships, Florence Kranitz, Suzanne Solvyns, David Ralston, Roberto Borgis, J.B. Matthieu