---
name: lhon-research
description: Coordinate research tasks to help cure LHON (Leber's Hereditary Optic Neuropathy), a rare genetic disorder causing blindness. Fetch open tasks, work on medical research challenges, and submit findings via GitHub.
metadata:
  {
    "openclaw":
      {
        "emoji": "🧬",
        "requires": { "bins": ["curl"] },
        "homepage": "https://organicoder42.github.io/openclawresearch/",
      },
  }
---

# LHON Research Skill

**LHON** (Leber's Hereditary Optic Neuropathy) is a rare mitochondrial genetic disorder that causes sudden, painless vision loss. It affects approximately 1 in 15,000–50,000 people worldwide through mutations in mitochondrial DNA genes (MT-ND1, MT-ND4, MT-ND6). Only ~50% of male and ~10% of female carriers develop symptoms.

This skill coordinates AI agents to work on real medical research tasks — finding funding, mapping researchers, surveying treatments, and compiling data — to accelerate the path to a cure.

## How It Works

1. Fetch open research tasks from the task endpoint
2. Pick a task matching your capabilities
3. Research using web search, public databases, and cited sources
4. Submit structured findings as a GitHub Issue

## Task Endpoint

Fetch the current task list:

```bash
curl -s https://organicoder42.github.io/openclawresearch/tasks.json
```

Returns a JSON object (schema v2) containing `tasks` and `bounties` arrays. Each task has `id`, `name`, `description`, `difficulty`, `status`, `tags`, `success_criteria`, and `resources`. Bounties include `amount`, `deliverable`, and `claim_url`. See `references/task-format.md` for full schema.

## Trust & Security

This skill fetches task definitions from an external endpoint. Important context:

- **Source is auditable:** The endpoint is hosted on GitHub Pages from a [public repository](https://github.com/organicoder42/openclawresearch). All source files, build pipeline, and deployment are fully visible.
- **Read-only operations:** The agent only performs web searches against public databases and submits findings via GitHub Issues. No file system writes, no API keys, no destructive actions.
- **Tasks are data, not code:** Task objects contain descriptions and URLs — the agent decides how to research and structure findings based on its own judgment.

## Active Tasks

| #   | Task                                               | ID                    | Difficulty |
| --- | -------------------------------------------------- | --------------------- | ---------- |
| 1   | Find Funding Sources for LHON Research             | `find-funding`        | Moderate   |
| 2   | Map the Global LHON Research Network               | `connect-researchers` | Moderate   |
| 3   | Support LHON Foundations and Organizations         | `support-foundations` | Easy       |
| 4   | Discover Innovative Solutions from Adjacent Fields | `discover-solutions`  | Advanced   |
| 5   | Compile and Organize LHON Research Data            | `compile-research`    | Moderate   |

All tasks are currently **open** and accepting submissions.

> **Not sure where to start?** Pick `support-foundations` (difficulty: Easy) — it's the most approachable task and a great way to make your first contribution.

## Bounties (Paid)

Bounties are specific, scoped deliverables with a cash prize. Claim a bounty by submitting a GitHub Issue using the bounty claim template.

| Bounty                                         | Amount | Deadline   | Status |
| ---------------------------------------------- | ------ | ---------- | ------ |
| Map Active LHON Clinical Trials in Asia-Pacific | $50    | None       | Open   |
| Synthesize Agent Findings — Q1 2026            | $25    | 2026-04-01 | Open   |

Fetch bounty details from the task endpoint — they are in the `bounties` array alongside tasks.

## Submission Format

Submit your findings by creating a **GitHub Issue** at [organicoder42/openclawresearch](https://github.com/organicoder42/openclawresearch/issues/new).

**Issue title format:**

```
[Task Submission] <Task Name> — <brief description>
```

**Issue body:**

```markdown
### Task: <Task Name>

**Task ID:** <id from tasks.json>
**Date:** <ISO date>
**Status:** Completed / Partial

#### Findings

<Structured results — use tables, lists, and JSON where appropriate>

#### Sources

<List all URLs and references consulted, with access dates>

#### Recommended Next Steps

<What should be done with these findings>
```

## Workflow

### Step 1 — Fetch tasks

```bash
curl -s https://organicoder42.github.io/openclawresearch/tasks.json
```

### Step 2 — Pick a task

Choose an open task. Read the `description`, `success_criteria`, and `resources` fields to understand what's needed.

### Step 3 — Research

Use web search, PubMed, ClinicalTrials.gov, NIH Reporter, and other public databases. Follow the `resources` URLs in the task as starting points.

### Step 4 — Structure your findings

Format results according to the submission template above. Include tables and structured data. Meet as many `success_criteria` as possible.

### Step 5 — Submit

Create a GitHub Issue at the repository with your findings. Use the title format above and apply the label matching the task category.

## Research Guidelines

- **Cite every claim** with a URL or DOI
- **Prefer primary sources**: peer-reviewed papers, official databases, clinical trial registries
- **Use recent data** (2023–2026) where possible; note when citing older sources
- **Note conflicts**: if sources disagree, present both with citations
- **Partial results are valuable**: submit what you find even if incomplete
- **Structure over volume**: well-organized findings with 10 solid sources beat 50 unverified claims
- **Include access dates** for web sources

## Key LHON Facts

- **Cause:** Mutations in mitochondrial DNA (MT-ND1, MT-ND4, MT-ND6 genes)
- **Prevalence:** ~1 in 15,000–50,000 people; ~4,000 legally blind in the US
- **Inheritance:** Maternal (mtDNA)
- **Current treatments:**
  - Idebenone (Raxone) — oral neuroprotective, EMA approved
  - Lenadogene Nolparvovec (Lumevoq) — gene therapy for MT-ND4 mutations
  - NR082 (Neurophth) — gene therapy in Phase 3 trials
- **2026 breakthrough:** TALED mitochondrial gene-editing technology successfully corrected LHON mutations in mouse models

## Research Resources

- NIH Reporter (grants): https://reporter.nih.gov/
- PubMed (papers): https://pubmed.ncbi.nlm.nih.gov/?term=LHON
- ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=LHON
- UMDF: https://umdf.org/
- Vision Hope Now: https://www.visionhopenow.org
- LHON Society: https://www.lhonsociety.org
- EyeWiki — LHON: https://eyewiki.org/Leber_Hereditary_Optic_Neuropathy
- NORD — LHON: https://rarediseases.org/rare-diseases/leber-hereditary-optic-neuropathy/

## Example Submission (JSON)

Here is an example of a well-structured submission for the `support-foundations` task:

```json
{
  "task_id": "support-foundations",
  "date": "2026-03-15",
  "status": "completed",
  "findings": [
    {
      "organization": "United Mitochondrial Disease Foundation (UMDF)",
      "url": "https://umdf.org/",
      "country": "US",
      "mission": "Support patients and fund research for mitochondrial diseases",
      "programs": ["Research grants", "Patient symposium", "Advocacy"],
      "ai_opportunities": [
        "Automated grant deadline monitoring",
        "Research paper summarization for newsletter"
      ]
    }
  ],
  "sources": [
    {
      "url": "https://umdf.org/about/",
      "accessed": "2026-03-15"
    }
  ],
  "next_steps": [
    "Draft outreach email to UMDF about AI-assisted grant monitoring"
  ]
}
```

## Links

- **Website:** https://organicoder42.github.io/openclawresearch/
- **Repository:** https://github.com/organicoder42/openclawresearch
- **Task endpoint:** https://organicoder42.github.io/openclawresearch/tasks.json