STRC Research

STRC Website and Communication

5 min read

STRC Website and Communication

The Site: strc.egor.lol

The STRC research is publicly documented at strc.egor.lol. Built with Astro Starlight, deployed on Cloudflare Pages.

Purpose

The site serves two audiences simultaneously:

  1. Other STRC families: parents who get a VUS result, don’t know what it means, and have nowhere to turn
  2. Researchers: professional context for the outreach letters; shows the work is serious

Technical Stack

  • Framework: Astro Starlight (documentation-focused static site)
  • Hosting: Cloudflare Pages (auto-deploy from GitHub)
  • Repo: ~/Sites/site-strc-egor-lol/
  • Content: src/locales/en.json (646 lines, all text content)
  • 3D models: AlphaFold3 CIF files rendered live in the browser

What the Site Contains

  • Full reclassification analysis (VUS → Likely Pathogenic journey)
  • AlphaFold3 structural experiments with 3D molecular viewers
  • Mini-STRC hypothesis explanation
  • Dual-vector vs single-vector Poisson analysis
  • Electrostatic analysis of E1659A
  • Sonogenetic proof of concept
  • Sonoporation delivery model
  • Immune response model
  • Prime editing feasibility
  • Research methodology (how it was done, with all tools listed)
  • Letter templates for other families

Voice and Tone Principles

The site is written for parents, not geneticists. Principles:

  • No jargon without explanation: every technical term is defined inline
  • Show the math: numbers are presented, not hidden
  • First person where appropriate: “my son Misha” — authenticity over clinical distance
  • Uncertainty is explicit: speculation is labeled, evidence is labeled
  • Reproducibility: every tool cited with a link; cost estimates included
  • Hope without hype: the science supports optimism; no false promises

The site opens with Egor’s personal story because families need to feel someone with the same problem researched it, not a distant institution.

Letter to Hong Kong Children’s Hospital

Reclassification Request (2026-03-15)

Formal letter to HK Children’s Hospital Genetics Department requesting:

  • Update of Misha’s variant classification from VUS → Likely Pathogenic
  • Inclusion of new evidence (conservation, AlphaMissense, in-trans confirmation)
  • Updated clinical records for gene therapy trial eligibility

Letter file: ~/Documents/Disability Card/misha-france-mdph/LETTER-Reclassification-Request-STRC-2026-03-15.pdf

Evidence summary included in letter:

  • 4 ACMG criteria (PM2_Supporting, PM3_Moderate, PP1_Supporting, PP3_Moderate)
  • Conservation alignment (9 mammals, 100% conserved)
  • AlphaMissense 0.9016 with Pejaver 2022 calibration table
  • AF3 structural evidence (no structural damage)

Outreach to STRC Researchers

Three emails sent to leading STRC research groups.

Jeffrey Holt — Harvard Medical School (Responded 2026-03-17)

Contact: Jeffrey Holt, Harvard Medical School, Boston Expertise: Cochlear gene therapy pioneer; STRC, OTOF, and multiple hearing loss programs; Anc80L65 co-developer

Email sent: Research summary (mini-STRC hypothesis, sonogenetic concept, dual-vector Poisson analysis)

Response (same day, 2026-03-17): “Thank you for reaching out. This is interesting work. I’m sharing it with the rest of our team.” — paraphrased.

Jeffrey Holt noted: their lab is already working on a minigene approach for STRC. Our computational analysis arrived independently at the same conclusion (remove N-terminal disordered region). This is independent validation of the hypothesis.

Significance: First researcher response. From one of the world’s leading labs in exactly this area. Their team is working on the same problem Egor modeled computationally.

Saaid Safieddine — Institut Pasteur, Paris

Contact: Saaid Safieddine, Institut Pasteur, Paris, France Expertise: Inner ear gene therapy; OTOF and DFNB programs; European perspective

Email sent: Research summary with focus on reclassification evidence and mini-STRC hypothesis

Status: Sent 2026-03-15; awaiting response.

Why Safieddine: Institut Pasteur has an active gene therapy program and France is a natural fit given Egor’s French passport and MDPH application.

Yilai Shu — Fudan University, Shanghai

Contact: Yilai Shu, Fudan University Eye & ENT Hospital, Shanghai Expertise: Chinese cochlear gene therapy trials; OTOF first-in-human trials in China (2023); STRC research

Email sent: Research summary with focus on clinical trial access and pediatric timing

Status: Sent 2026-03-15; awaiting response.

Why Yilai Shu: China had the first OTOF gene therapy successes (2023); they may be ahead on STRC timelines.

Communication Strategy

Why Email, Not Social Media

Researchers don’t monitor social media for case reports. Direct email works better because:

  • Directly relevant to their research program
  • Shows the work (links to strc.egor.lol, computation, specific results)
  • Easy to forward to team (which Holt did)
  • No noise; high signal

What Made the Emails Work

  • Not a patient begging for treatment — a researcher presenting computational work
  • Specific questions — “has anyone explored 6xNFAT inducible promoters in cochlear gene therapy?” is more answerable than “how do I help my son?”
  • Evidence-based — actual numbers, models, AF3 results attached
  • Short — under 500 words, results in bullets, detailed site for follow-up

Future Outreach

  • Riku Nagata (UCLA, prestin research)
  • Karen Steel (King’s College London, STRC mouse models)
  • Régis Nouvian (INSERM Montpellier, inner ear France)
  • Regeneron contacts (AAV.104 program)

Media / Open Science Strategy

All models open-sourced on GitHub: https://github.com/lyfar/strc-research

Rationale: if someone else can use these models, even better. Science accelerates through sharing.

Connections

Graph View

Backlinks