MISHA Foundation — Grant Strategy
Funding roadmap for the index.
Key Insight: Seed Money Unlocks NIH Grants
From foundation-evolution-playbook (Usher 1F case study):
- Give $50-100K in preliminary data grants to a researcher (e.g., Holt Lab)
- Researcher uses that data to apply for $1M+ NIH R01 grant
- Foundation gets credit, relationship, and co-authorship access
- This is the standard playbook — don’t try to fund research directly at first
Grant Framing (Critical)
Wrong frame: “We are building a patient registry” Right frame: “We are building natural history data, genotype-phenotype correlation, and trial readiness infrastructure for a Phase 1/2 IND filing”
Grant committees fund research outcomes, not databases.
Funding Sources by Phase
Phase 1 (Year 1) — Seed Grants
| Source | Amount | Notes |
|---|---|---|
| Personal (Egor) | $5,000-25,000 | First grant to Holt Lab for preliminary data |
| NORD fiscal sponsor fund | Early donations | After fiscal sponsor approval |
Phase 2 (Year 2-3) — Institutional Grants
| Source | Amount | Notes |
|---|---|---|
| HMRF (HK Government) | HKD 1.5M (~$200K USD) | Needs academic PI (Shu or Holt). Apply via CLG |
| CZI Rare As One | 5-year grant | Current cycle: channelopathies/ciliopathies. STRC (IEM) may qualify in future cycles. Apply when ready |
| NIH R01 | $1M+ | Via Holt Lab (they apply, foundation co-funds) |
Phase 3 (Year 3-5) — Major Grants
| Source | Amount | Notes |
|---|---|---|
| NIH R21 (exploratory) | $275K for 2yr | Preliminary data from Phase 1 grant needed |
| ARO (Association for Research in Otolaryngology) | Varies | Annual conference, present registry data |
IRB / Ethics Requirements
- Anonymous survey (variant + audiogram data): no IRB needed
- Full patient registry with PII: IRB required
- Best path: piggyback on Holt Lab’s Boston Children’s IRB (free, most credible, fastest)
- Alternative: Independent central IRB ($3-5K)
Next Actions
- Give Holt permission to share analysis (puts Egor’s name in front of STRC team)
- Ask Holt and Shu to serve as Scientific Advisors (needed for HMRF and CZI applications)
- Send mini-STRC hypothesis page to Holt for review (strc.egor.lol/mini-strc)
- Find NORD fiscal sponsorship application (for Phase 2 donor receipts)
- Present at ARO conference Year 2
Realistic Financial Projections (from 7-foundation analysis)
- Year 1: $25-50K grassroots (family, rare disease community)
- Year 3: $150-550K with academic partnership grants
- Year 5+: $1M+ if NIH R01 comes through via Holt Lab
Connections
[part-of]index[source]foundation-evolution-playbook[source]Legal Structure for Cross-Border Rare Disease Foundation- Jeffrey Holt
- Yilai Shu
[about]Misha[see-also]MISHA Foundation HK CLG Structure[see-also]MISHA Foundation Fiscal Sponsor Strategy[see-also]“Optimize for the Evaluator’s Internal Criteria” (Brain) — the grant framing section is a direct application of this principle: frame for what the committee actually uses to approve