- 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.























