History of the Foundation


  • The CJD Foundation formed in Miami, Florida by Mayra Lichter and Cele Sardo, 1993 
  • Collaboration with the National Prion Disease Pathology Surveillance Center, 1999
  • 2000 First scientific conference held in Miami
  • Task force and political advocacy group formed, 2001
  • Foundation moved to Akron, Ohio September 2002
  • Helpline established November 2002
  • First family conference held in Washington, D.C., May 2002
  • 2004 First Co-operative Agreement grant received from the Centers for Disease Control and Prevention. We continue to receive this grant 
  • 2005 Created 3 educational DVD’s, one for medical professionals, one for infection control personnel and one for funeral directors and embalmers
  • 2006 The CJD International Support Alliance was formed. As of 2012 it consists of 10 member countries
  • 2011 Initiated Family Workshops which are held around the country
  • 2013 The CJD Foundation moved its headquarters to New York, NY