Programs
What the foundation does outward. Programs are ongoing organizational arms, not time-boxed initiatives.
The 4 programs
-
Research Lab — AI/computational research arm. Coordinates with
~/STRC/vault. Publishes hypothesis ranking deltas, AlphaFold3 structural data, druggable-pocket analyses. Open-access by default. -
Patient Registry — RARE-X integration. IRB-approved. Family-controlled records. Natural-history data. Prerequisite for any future clinical trial readiness in STRC / DFNB16 cohort.
-
Grants Program — disbursements OUT to external researchers. First grant target: Holt Lab seed grant for STRC mouse model + AAV vector optimization.
-
Families — community engagement, support, advocacy. The network the founder family wished existed.
Why 4 (and not more)
Mirrors the 7-foundation playbook’s converged pattern:
- de-risk via tools → Research Lab + Registry
- credibility pivot → board/SAB (governance sphere) + Grants Program legitimacy
- regulatory engagement → Families + Registry
- financial scaling via seed grants → Grants Program
Adding a 5th program before scaling is premature. Resist scope creep.
Cross-program operations
- Each program has its own
index.md(program-hub) +log.md+ program-local notes. - Programs disburse via
programs/grants-program/only — no direct funds-out from Research Lab or Registry. - Public reporting: each program’s index.md is published to wiki, with a quarterly “what we shipped” section.