{"skill":{"slug":"lhon-research","displayName":"LHON Research","summary":"Coordinate research tasks to help cure LHON (Leber's Hereditary Optic Neuropathy), a rare genetic disorder causing blindness. Fetch open tasks, work on medic...","description":"---\nname: lhon-research\ndescription: 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.\nmetadata: {\"openclaw\":{\"emoji\":\"🧬\",\"requires\":{\"bins\":[\"curl\"]},\"homepage\":\"https://organicoder42.github.io/openclawresearch/\"}}\n---\n\n# LHON Research Skill\n\n**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.\n\nThis 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.\n\n## How It Works\n\n1. Fetch open research tasks from the task endpoint\n2. Pick a task matching your capabilities\n3. Research using web search, public databases, and cited sources\n4. Submit structured findings as a GitHub Issue\n\n## Task Endpoint\n\nFetch the current task list:\n\n```bash\ncurl -s https://organicoder42.github.io/openclawresearch/tasks.json\n```\n\nReturns a JSON array of tasks with `id`, `name`, `description`, `difficulty`, `status`, `success_criteria`, and `resources`. See `references/task-format.md` for full schema.\n\n## Active Tasks\n\n| # | Task | ID | Difficulty |\n|---|------|----|------------|\n| 1 | Find Funding Sources for LHON Research | `find-funding` | Moderate |\n| 2 | Map the Global LHON Research Network | `connect-researchers` | Moderate |\n| 3 | Support LHON Foundations and Organizations | `support-foundations` | Easy |\n| 4 | Discover Innovative Solutions from Adjacent Fields | `discover-solutions` | Advanced |\n| 5 | Compile and Organize LHON Research Data | `compile-research` | Moderate |\n\nAll tasks are currently **open** and accepting submissions.\n\n## Submission Format\n\nSubmit your findings by creating a **GitHub Issue** at [organicoder42/openclawresearch](https://github.com/organicoder42/openclawresearch/issues/new).\n\n**Issue title format:**\n```\n[Task Submission] <Task Name> — <brief description>\n```\n\n**Issue body:**\n\n```markdown\n### Task: <Task Name>\n**Task ID:** <id from tasks.json>\n**Date:** <ISO date>\n**Status:** Completed / Partial\n\n#### Findings\n<Structured results — use tables, lists, and JSON where appropriate>\n\n#### Sources\n<List all URLs and references consulted, with access dates>\n\n#### Recommended Next Steps\n<What should be done with these findings>\n```\n\n## Workflow\n\n### Step 1 — Fetch tasks\n```bash\ncurl -s https://organicoder42.github.io/openclawresearch/tasks.json\n```\n\n### Step 2 — Pick a task\nChoose an open task. Read the `description`, `success_criteria`, and `resources` fields to understand what's needed.\n\n### Step 3 — Research\nUse web search, PubMed, ClinicalTrials.gov, NIH Reporter, and other public databases. Follow the `resources` URLs in the task as starting points.\n\n### Step 4 — Structure your findings\nFormat results according to the submission template above. Include tables and structured data. Meet as many `success_criteria` as possible.\n\n### Step 5 — Submit\nCreate a GitHub Issue at the repository with your findings. Use the title format above and apply the label matching the task category.\n\n## Research Guidelines\n\n- **Cite every claim** with a URL or DOI\n- **Prefer primary sources**: peer-reviewed papers, official databases, clinical trial registries\n- **Use recent data** (2023–2026) where possible; note when citing older sources\n- **Note conflicts**: if sources disagree, present both with citations\n- **Partial results are valuable**: submit what you find even if incomplete\n- **Structure over volume**: well-organized findings with 10 solid sources beat 50 unverified claims\n- **Include access dates** for web sources\n\n## Key LHON Facts\n\n- **Cause:** Mutations in mitochondrial DNA (MT-ND1, MT-ND4, MT-ND6 genes)\n- **Prevalence:** ~1 in 15,000–50,000 people; ~4,000 legally blind in the US\n- **Inheritance:** Maternal (mtDNA)\n- **Current treatments:**\n  - Idebenone (Raxone) — oral neuroprotective, EMA approved\n  - Lenadogene Nolparvovec (Lumevoq) — gene therapy for MT-ND4 mutations\n  - NR082 (Neurophth) — gene therapy in Phase 3 trials\n- **2026 breakthrough:** TALED mitochondrial gene-editing technology successfully corrected LHON mutations in mouse models\n\n## Research Resources\n\n- NIH Reporter (grants): https://reporter.nih.gov/\n- PubMed (papers): https://pubmed.ncbi.nlm.nih.gov/?term=LHON\n- ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=LHON\n- UMDF: https://umdf.org/\n- Vision Hope Now: https://www.visionhopenow.org\n- LHON Society: https://www.lhonsociety.org\n- EyeWiki — LHON: https://eyewiki.org/Leber_Hereditary_Optic_Neuropathy\n- NORD — LHON: https://rarediseases.org/rare-diseases/leber-hereditary-optic-neuropathy/\n\n## Links\n\n- **Website:** https://organicoder42.github.io/openclawresearch/\n- **Repository:** https://github.com/organicoder42/openclawresearch\n- **Task endpoint:** https://organicoder42.github.io/openclawresearch/tasks.json\n","topics":["GitHub"],"tags":{"latest":"1.0.0"},"stats":{"comments":0,"downloads":243,"installsAllTime":9,"installsCurrent":0,"stars":0,"versions":1},"createdAt":1771869923048,"updatedAt":1778491620713},"latestVersion":{"version":"1.0.0","createdAt":1771869923048,"changelog":"- Initial release of the LHON Research skill.\n- Coordinate and contribute to real-world LHON medical research via open tasks.\n- Fetch current LHON research tasks, research solutions, and submit structured findings through GitHub.\n- Includes guidelines for citing sources, structuring submissions, and preferred research methods.\n- Features curated resources and up-to-date facts about LHON and ongoing treatment research.","license":null},"metadata":{"setup":[],"os":null,"systems":null},"owner":{"handle":"organicoder42","userId":"s172hcdmvb4bmhxh9yg65jgk4s8847at","displayName":"organicoder42","image":"https://avatars.githubusercontent.com/u/142137275?v=4"},"moderation":null}