HISTORY OF THE FOUNDATION
  • Founded in Miami, Florida 1993 by Mayra Lichter and Cele Sardo.
  • Website and email support network was set up.
  • First scientific conference held in Miami May 2000.
  • Task force and political advocacy group formed, 2001.
  • Foundation moved to Akron, Ohio September 2002.
  • Collaboration with the National Prion Disease Pathology Surveillance Center, 2002.
  • Helpline up and running November 2002.
  • First family conference held in Washington, DC May 2002.
  • Formed alliances with support groups in the UK, Japan, Italy and Australia.
  • Hired an Administrative Assistant in 2003.
  • Hired an Executive Director in 2005.
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