Your support is so important! We need your continued help to break new ground in the battle against Prion Disease.

Thanks to your past assistance, we have sponsored medical lectures about CJD around the country … we have hosted well-attended programs from monthly teleconferences to the annual conference in Washington, DC to Strides for CJD events to local Family Workshops … and we have answered hundreds of HelpLine inquiries from families and medical professionals.

This year, we awarded a record seven research grants to promising studies, focused on:

  • Assessing the stability of prion protein levels in the spinal fluid of mutation carriers over time, to establish a biomarker in preparation for clinical trials of drugs currently under development.
  • Exploring how to deliver to the brain a porphyrin (compound) with anti-prion properties and testing that compound in animal models.
  • Identifying new targets for therapeutics by studying brain electrical signals and how they are impacted by toxic prions.
  • Introducing fluorescent substrates into Protein Misfolding Cyclic Amplification (PMCA) technology to monitor prion replication in real time, to improve diagnosis and differentiate prion strains.
  • Testing an anti-prion antibody (a nanobody) to determine whether it can block prion propagation and stop the progression of Prion Disease.
  • Modeling CJD using neurons derived from human Induced Pluripotent Stem Cells and using the model to test therapeutic compounds.
  • Investigating the relevance of blood DNA methylation signals for disease management in CJD to develop markers to track the disease and aid in clinical trials.

Each of the dedicated and brilliant scientists who received these grants is taking a unique plan of attack, looking at a different piece of the puzzle, and unwrapping one of the mysteries of Prion Disease. In the aggregate, they are moving us one step closer to a cure. For more information on all of these studies, visit

Byron Jones, Dallas Cowboys Cornerback, Wears Cleats Representing the CJD Foundation in Honor of the Memory of Diana Hunter

The work required to battle Prion Disease is endless, and we never stop:

Serving families

We're there for families, answering their calls and emails, connecting them with Prion Disease experts, providing them information on caregiving and diagnosis, and offering support groups, family workshops, a teleconference speaker series, an information-packed website, caregiving information, and an annual conference.

Educating medical professionals, funeral professionals, and the general public

We work on raising awareness, disseminating factual information about CJD, advocating for families who need diagnosis
and care, scheduling and supporting medical lectures so professionals know current best practices in diagnosis and care for CJD patients.

Spreading the word to public policymakers and fighting for funding

We fight for funding for surveillance and research on Capitol Hill … and your letters, emails, and visits to Washington, DC remain critically

Pursuing a treatment, a cure, and a better understanding of Prion Disease.

With your help over our over 25 year history, we've continued to advance our mission to support families affected by Prion Disease, raise awareness, and support medical education and research.