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Creutzfeld-Jakobs Disease Foundation


The Creutzfeldt-Jakob Disease Foundation consists of members who are concerned about the complexity of issues surrounding this fatal brain disease. Our mission is to support families and loved ones touched by CJD.



  • The CJD Foundation formed in Miami, Florida by Mayra Lichter and Cele Sardo, 1993
  • Collaboration with the National Prion Disease Pathology Surveillance Center, 1999
  • 2002 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

Q. Who do you serve?

A. The Foundation’s philosophy is to be proactive by establishing collaborations and linkages, communicating with family members, researchers, physicians and political representatives and informing the broader community about CJD.

Q. What is your organization’s proudest accomplishment?

A. We are the embodiment of Margaret Meade’s famous words, Never doubt that a small group of dedicated people can change the world, Indeed it is the only thing that ever has. Over the past 9 years, through hard work on the part of the CJD Foundation, our Medical Director Dr. Pierluigi Gambetti, and our families we have achieved many of our political advocacy objectives. To learn more, click here.

Q. What is CJD Foundation’s greatest need?

A.  Support is a key ingredient in coping with CJD and our primary goal is to be an important part of your support system.  Support from those who have had similar experiences can be more helpful than any written information.

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