The Generative Brain
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CJD Foundation

US nonprofit led by families that funds human prion disease research, supports families (genetic counseling guidance, support resources, an annual Family Conference) and co-built PrionRegistry.org. It is the largest dedicated funder of academic prion research found in this work, with project grants of up to USD 50,000 to 100,000.

Key facts

  • Led by Debbie Yobs, President and Executive Director; the 2026-27 call is issued over her name.
  • Has awarded more than 85 grants and nearly USD 6 million in research grants per its researchers page (the page may predate January 2026); a January 2026 announcement reported more than USD 6 million and ten grants and fellowships.
  • 2026-27 call: one-year grants up to USD 50,000 and two-year grants up to USD 100,000 for human prion disease research.
  • 2026-27 timetable: letters of intent were due 16 July 2026; selected applicants notified by 30 September 2026; full applications due 30 October 2026 (invited applicants only); awards communicated by 15 January 2027 and announced by 27 January 2027.
  • Fellowship 2026-27: up to USD 100,000 for one year to one awardee; applications due 30 October 2026.
  • Recipients must report at the Foundation's annual conference; funding comes from families affected by CJD, Strides for CJD events and Memorial Grants from families.
  • Recent awards map the active field: Castilla (Spain), Aguzzi and Caredio (Zurich), Schmitt-Ulms (Toronto), Kong (NPDPSC), Schmitz (Goettingen), Morales (Houston), Block (Colorado State), Llorens and Zerr (Spain and Germany), the MRC Prion Unit and Gate Bioscience.
  • Its genetic counseling page advises considering life and long-term care insurance before testing and counselors trained in the Huntington protocol.
  • Co-built the opt-in PrionRegistry.org with Prion Alliance and CJDISA; names and contact details are not shared with researchers.
  • Hosts sponsor community statements (PRiSM, 22 April 2026) and Sangamo slides on ST-506 (12 July 2026); enrollment requests for PROSPECT go through the Foundation.
  • Family Conference held in Chicago on 10 to 12 July 2026, where 2025 grantees reported.

Timeline

  1. 2026Ten grants and fellowships announced.
  2. 2026Hosts the PRiSM community statement.
  3. 2026Family Conference opens in Chicago (to 12 July).
  4. 2026Hosts Sangamo ST-506 presentation.
  5. 2026Letters of intent due (passed).
  6. 2026Selected letter-of-intent applicants notified.
  7. 2026Full applications and fellowship applications due.
  8. 2027Awards for the 2026-27 call to be announced.
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