Key facts
- Founded in 2012 by Vallabh and Minikel to fund research, advocate and connect patients and researchers.
- Described by Minikel as a tax-deductible 501(c)(3) non-profit that supports the research at the Broad.
- Sponsored and funded the MGH biomarker study from July 2017 with donations; original quota of 20 participants, later extended toward 60.
- In 2018, with the CJD Foundation, CJDISA and the Broad Data Donation Platform, it launched the Prion Registry.
- Donations are matched by donors at times (1:1 up to USD 10,000 in the 2022 year-end appeal); the lab it supports had eight staff in 2022.
- The April 2026 PRiSM statement says drug development was funded by NIH grants and by donations to the Broad and to Prion Alliance.
- Funders of the base editing paper included NIH, the Broad, Prion Alliance and HHMI.
- Publishes sponsor-independent community updates on trials (PRiSM, July 2026 mid-year update).
Timeline
- 2012Founded by Vallabh and Minikel.
- 2017Sponsors the MGH research study.
- 2018Mid-year update: Prion Registry launched; MGH study extending.
- 2022Year-end update and donation match.
- 2025Acknowledged as a funder of the base editing paper.
- 2026Posts the PRiSM launch statement.
- 2026Mid-year update: symptomatic PRiSM recruitment only.
Sources for this page
- Charles River Research Models in Drug Discovery Award (2017)
- Eric Minikel: about (cureffi.org)
- Prion Alliance sponsors MGH research study (19 July 2017)
- Prion Alliance: mid-year update (11 June 2018)
- Prion Alliance: end-of-year update 2022
- Broad Institute news: PRiSM begins enrolling; siRNA study published in Nucleic Acids Research
- Prion Alliance: First-in-human trial of PrP-siRNA in symptomatic prion disease
- Harvard Gazette: team hits milestone toward prion disease treatment (April 2025)
- Prion Alliance: Mid-year update 2026