MISHA Foundation — Index
MISHA: Molecular Intelligence for Sensorineural Hearing Advancement. Parent-driven research initiative for rare hearing genetics, born from Misha’s STRC case (DFNB16 / sensorineural hearing loss).
→ Public wiki target: wiki.mishafoundation.org (planned).
Start Here
- AGENTS — vault schema and operations contract
- README — public-facing description
- now — current focus (max 3 items)
- log — vault-wide chronology
- Dashboard — live operational view
Spheres (10 MOCs)
- Mission & Identity — the WHY, positioning, theory of change, brand voice
- Legal & Compliance — HK CLG, Section 88, US fiscal sponsor, annual filings, audits
- Board & Advisors — directors, Scientific Advisory Board, charters, meetings
- Team & Volunteers — staff, contractors, volunteer roles (placeholder until hires)
- Fundraising — patron pipeline, individual giving, grants we receive, events
- Programs — umbrella over the 4 sub-programs
- Operations — back-office: finance, IT, vendor management
- Communications — public website, wiki, press, social, donor reporting
- Strategy & Planning — multi-year plan, OKRs, annual review
- Public Wiki — meta-sphere for the wiki itself
Programs (4 — what the foundation does outward)
- Research Lab — AI/computational research arm; coordinates with
~/STRC/ - Patient Registry — RARE-X integration, IRB, family onboarding
- Grants Program — disbursements to external researchers (Holt Lab seed grants)
- Families — community engagement, support, advocacy
Active Projects (time-boxed initiatives)
- HK CLG Incorporation — Day 1-30 priority
- Holt SAB Formalization — Day 1-7 priority
- First Patron Outreach — Year 1 single point of failure
- Domain & Brand Identity — mishafoundation.org + brand kit
- Public Wiki Launch — Quartz deployment
- RARE-X Registry Setup — registry program technical setup
Decisions
→ See index for full FDR list. Key ones:
- (none yet — first FDR will be HK-first dual-prong structure)
People
[[people/_team/Egor Lyfar]]— founder[[people/_collaborators/Jeffrey Holt]]— SAB-confirmed (2026-03-31)[[people/_collaborators/Yilai Shu]]— potential SAB[[people/_patrons/]]— target HNW pipeline (PRIVATE)
External Bridges
- Misha → Brain
people/Misha.md - STRC Research Program → STRC vault
- Egor → Brain
people/Egor Lyfar.md - Lyfar Studio → Brain operations vault
- 5-Year Vision → Brain
notes/5-Year Vision — Asia-Native Research Lab.md
Sources
- Foundation Evolution Playbook — 7 parent-driven rare-disease foundations analyzed
- Legal Structure for Cross-Border Rare Disease Foundation
- Patient Registry Blueprint for STRC Hearing Loss
- Reading log — Dataview-driven literature index
Connections
[part-of]AGENTS[applies]Mission & Identity